Team Magnus

Home!

2012-01-05T10:26:00.001-08:00

We are home!

Whew, the last couple of days have been exhausting. The cath itself really went as smoothly as we could have hoped (including the excellent news that came out of it, AND having one of our favorite nurses both days) and Magnus's recovery was a lot easier than last time. It was mostly easier on us parents, too, although I didn't mention that I did have an hour of anxiety when the cath lab paged us to say that they were finished, and when I called back they said that they were finished but that they "didn't really do anything" and that the doctor would explain when he met with us in an hour or so. This made me very nervous, since the plan going into the cath was to coil as many of his collateral veins as his pressures wouldn't allow, so not doing anything seemed like it meant bad news. As it turned out, they didn't coil any of his collaterals because they felt they didn't need to, and as I mentioned yesterday, basically everything looked as good as could be hoped.

Last time he had a lot of bleeding at the cath sites and clearly didn't feel good for about 24 hours afterward. This time, he was a bit groggy when we first saw him, but the nurse in the anesthesia recovery unit said that he had woken up "really fast" and was mostly his old self right away. After a cath, you're supposed to lie flat and keep your legs straight to protect the catheterization site in the groin. Definitely NOT easy to enforce with an active 2-year-old! We managed to keep him distracted pretty well with videos, but he kept trying to get up and run around.

At 5:30 his "bedrest" was finally over, and shortly after that, we got a pass to go down to the playroom, which we'd never done before. Magnus had a great time playing with toys and drawing pictures, but by 7:30, he was clearly tired, so we took him back to his room and tried to get him ready for bed. Of course, in the hospital, you don't always have a lot of control over your own schedule, and the nurses had to come in and check his vitals and stuff, and with all the excitement, even though he was really tired he didn't end up falling asleep until nearly 10.

Then, at 2 a.m., when the nurse came to check his vitals again, we found that his feeding tube had become disconnected from the feeding pump, and his bedding, pajamas, and diaper all needed to be changed. He didn't fall asleep again until 5 a.m.! We got 2 more hours of sleep and then had to be awoken for more medical stuff, but we basically got to go home first thing this morning! We had a few little hiccups with medication changes (he's now on all once or twice a day meds, which is much easier for us!) and a little bleeding incident when they took out his IV, but we were home by 9:30. And now I am going to take a nap.

"A perfect situation for him"

2012-01-04T13:31:00.000-08:00

Magnus is done, and we just got an excellent report from the cath doctor! They didn't do much but that's because they said he looks so good they didn't need to do much. The title of this post is a direct quote from what he told us. For the first time, his pressures are low enough that he could be a candidate for the third Fontan surgery, although he doesn't need to have the surgery right now. We also don't have to do another cath for another year! In a few minutes we can go down and see him...last time he woke up pretty unhappy, and I imagine this time will be the same.

Waiting

2012-01-04T11:26:00.001-08:00

We dropped Magnus off at the cath lab a little after 9 and he's still up there. Things generally went smoothly this morning, with the exception that the cold I thought he had entirely shaken was still evident when the doctors and nurses listened to his chest. However, they determined that since the congestion is in his upper airway and not in his lungs, it was safe to go ahead with the anesthesia and cath, but they said it might take him a little longer to come off the breathing tube when they're done.

We haven't heard anything from them, which is good, since the only reason we would expect them to have called by now is if there's a problem. My guess is that he'll probably be in there for another hour or more.

I think we're on

2012-01-03T05:20:00.000-08:00

Magnus's cath is scheduled for tomorrow. Last week, I was a bit worried that we'd have to reschedule, because he came down with a cold early in the week, but he seems to be fine now. Apparently we are scheduled to be first case, which is amazing; they do two cases a day in the cath lab, with the first starting around 8 a.m. and the second scheduled to start around noon. However, the last two times we've been second case and the first case has run late and we got started several hours late. Generally starting on time is one of the big advantages of being first case, but the real advantage is the time frame, since Magnus has to be fasted for 6 hours before he starts. Obviously, fasting from 2 a.m.–8 a.m. is a lot more pleasant than fasting from 6 a.m.– noon or several hours later. Also, there is a theoretical possibility that we could avoid an overnight stay being first case, although I'm not counting on that. Actually, I'm not counting on any of this until it actually happens because I know that today we could well get a call saying that Magnus has been bumped to second case or perhaps rescheduled altogether if there is an emergency. Hospital stays are charmingly like air travel in that way.

But hopefully all will go as planned, they will find no problems, and I can focus all my worry on the fact that last night our dishwasher started leaking into one of our downstairs fire alarms, causing it to repeatedly go off (miraculously, M slept right through it).

2

2011-12-14T13:36:00.000-08:00

I know, it's been more than 5 months since I posted! This is partly because a lot has happened (Iggy and I have been busy with work and Iggy has had some medical stuff of his own going on) and partly because very little has happened with Magnus's health.

We've only had one cardiology appointment since the summer, and from what they could tell in the echo, everything looked good! Magnus has managed to avoid any major illnesses so far this season, so we've stayed out of the hospital since his last cardiac catheterization. He goes back for his next one on January 4th, and we are keeping our fingers crossed for no ugly surprises from the cath.

Magnus has also continued to do well with his growth and development. He's grown a couple inches and has gained 3 pounds since the summer! He's in the 10th-25th percentile for weight for his age now, but has dropped off for height. I think this just means he's due for a growth spurt. He finally started walking on his own in August, and since then has been working on spinning, jumping, dancing and running. He also FINALLY learned to crawl...after he learned to walk. He's now almost at age level for his gross motor skills, and now his biggest challenges are speech and feeding. Magnus has very good understanding of what we say to him, but he only uses a few words, preferring to grunt and gesture to get his point across. He started speech therapy a couple of months ago, and we're hoping this will move things along. I saw a study published a few months back where researchers found that there was an increased risk of speech delays and learning disabilities among children who undergo general anesthesia more than once before the age of 2. Magnus underwent general anesthesia 7 times before the age of 2 (2 open heart surgeries, 1 G tube surgery, and 4 catheterizations!)

As for feeding, Magnus still gets almost all of his nutrition from sugary high-calorie formula, and we still use his feeding tube several times a day and overnight every night. He has actually become quite adventurous about the foods he will put in his mouth, but he still hasn't figured out how to chew and swallow solid food, and if he gets small pieces of food in his mouth he will panic, gag, and throw up. So, for example, he "eats" an apple by biting off tiny pieces with his front teeth and then throwing them on the floor (in possibly related news, Iggy told me that he saw a mouse in our living room last week!). He's been going to feeding therapy on and off for several months, but recently started home-based therapy, so again, we're hoping he'll make the same kind of progress in his speech and feeding in the next 6 months that he has made in his gross motor skills over the last 6 months.

Magnus turned 2 on November 19th! We had a small party for him (a small party feels like a big one when you have 6 children ages 4 and under in your house!) and he got a lot of presents. And now we have Christmas coming up. He doesn't know about Santa or any of that stuff yet, but he has been pretty interested in our Christmas tree, and has been pretty good about leaving the ornaments alone!

I'll end by posting a few recent pictures. I'm sure I'll be back in this space in a couple of weeks to report on how the cath goes!

Freedom!

2011-07-11T11:45:00.000-07:00

Magnus had his follow-up cardiology appointment today. Everything looked good and we were given the go-ahead to take him off the oxygen! I cannot even begin to tell you how excited we are about this development! Of course, at some point he might have to go back on it, but for now we're free! No more noisy concentrator 24 hours a day! No more having to fight with Apria to order supplies! No more being on a 7 foot tether when we're out and about and having to lug around an awkward backpack! No more having to stick his cannula back in his nose every 10 minutes after he pulls it out! And we can travel!

Check-up

2011-06-20T19:23:00.000-07:00

Magnus had his 18-month pediatrician's check-up today (although yesterday was his 19 month birthday). Although the scale said he had lost a couple of ounces from earlier this month in the hospital (I think the hospital scale is just a little heavier), he is still on the growth charts for both height and weight!

We asked the nurse to measure his oxygen sats while we were there, and they were 89-90% with oxygen on, and 84-85% with it off. I think both those numbers were probably artificially high (sat monitors have dubious reliability in general), we were very happy with those numbers. I never updated the blog about this, but shortly after Magnus got out of the hospital, I finally got to talk to his cardiologist about the possibility of coming off oxygen. She wanted him to stay on it for a few weeks after the cath to adjust to his new circulation after having all those collaterals coiled off, but she hinted that if his sats looked good at his next cardiology appointment, which is on July 11th, it was a possibility. Keep your fingers crossed...

One unfortunate aspect of today's appointment was that it was all too clear that Magnus had learned from his last hospitalization that those people in scrubs are NOT his friends. He sobbed while the nurse measured and weighed him and I had to put the sat probe on him because he wouldn't let the nurse do it. He was actually pretty good with the doctor, though, until she tried to use the dreaded stethoscope on him. Probably because she wasn't wearing scrubs. It didn't help that he had to get a shot today, but it was only one. All in all, it was not a bad visit.

Home!

2011-06-02T11:29:00.000-07:00

We are home.

Magnus slept reasonably well (by hospital standards) last night, but when he wasn't asleep, he clearly did not feel good. This morning, he was very fussy, insisted on being held all the time, and tried to swat away the nurses whenever they came close to take his temperature or listen to his heart! So, needless to say, we were relieved to be discharged, and since getting home, Magnus has definitely perked up, although he's not back to his normal self yet, and probably won't be for a few days.

Our regular cardiologist stopped by this morning to talk to us; she had only briefly read an e-mail from the cath doctor, and when I asked her about discontinuing oxygen, she said that since what we're doing is working, it didn't make sense to her to stop. Needless to say, I was not too happy to hear this. However, she agreed to talk to the cath doctor and make a final decision after reviewing everything more fully. So, fingers crossed that he talks some sense into her, or at least that we get some sort of reprieve from 24-hour-a-day oxygen, like maybe only at night. So, for now, we are back on oxygen (they had actually taken him off it in the hospital, and then he had to go back on it to go home, which is the opposite of how it usually works!)

Iggy is watching Magnus, and next on my agenda is to squeeze in a shower and a nap, and then I have to teach a class tonight; it's the first class of the summer semester, so I should try to be at least somewhat coherent and not scare off all my students!

Did I mention?

2011-06-01T21:06:00.000-07:00

...that Magnus's weight puts him in the tenth percentile for his age?

This is the first time since he was born that he's been on the growth charts!

In recovery

2011-06-01T19:58:00.000-07:00

Magnus is technically in "recovery," although the pediatric recovery room closes at 5 so he is physically in the pediatric cardiac ICU instead. That's fine with us because it's nice and quiet in here and we got to visit with some of our old nurses who saw us through his first two surgeries.

Magnus is groggy and pretty unhappy, but looks good.

Not much else to add, but one thing I thought was funny: the head cath doctor thought that Magnus was 2! I'm pretty sure this is officially the first time he has been mistaken for older than he really is.

Moving in the right direction

2011-06-01T19:21:00.000-07:00

Just got to talk to the doc and get confirmed details.

Basically, although there was not a dramatic improvement in his pressures, everything is moving in the right direction. Magnus has not grown any new collaterals, and they clamped off 6 today. Most excitingly, there is talk of taking him off oxygen and he gets to stop taking Plavix! And it looks like we'll be going home tomorrow a.m.

Gotta run and see him!

They're done

2011-06-01T18:33:00.001-07:00

Iggy just called up and they're finished in the cath lab. We're going to meet up with the head cath Dr. in about 15 minutes to discuss how things went and where we go from here. I may not be able to update for a while, though, because hopefully after that we'll get to go to recovery and see Magnus.

Pretty good news

2011-06-01T15:22:00.001-07:00

Just called the cath lab, they said Magnus is doing well, that his pressures are lower than last time (!!!!!) and they are still coiling off collateral veins. I don't know how significant the improvement is, but thank god it's not bad news. They are coiling off a lot of collateral veins and said they'd be in there at least another hour.

Lots of happy tears after getting off the phone, and my heart no longer feels like it's going to pound right out of my chest. But we still have to talk to the docs and figure out where we go from here.

Still no news

2011-06-01T15:22:00.000-07:00

Still haven't heard anything from the cath lab. I'm trying not to read into that one way or another. If they finished up really fast, though, that would probably be bad and mean that his pressures were too high for them to be able to do anything. Taking a long time could also be bad, though. Like I said, I'm trying not to read too much into it (and not being very successful).

Iggy and I are hanging out at the library. If you ever need to wait for someone having surgery or something at UCSF, the library is the best place to do it, especially now that they have wireless access here (they used to have it only for students & employees). The library has beautiful views, comfy chairs, it's nice and quiet, and it's right across the street. Yay library.

Just dropped off

2011-06-01T14:06:00.001-07:00

We finally brought Magnus up to the cath lab around 1:30, and are now eating lunch.

This morning actually went pretty smoothly, except when they tried and failed (but only once) to put in an IV and when they put him under with gas for the cath. Magnus was otherwise in good spirits and charmed everyone. We were also impressed that he now weighs 10.3 kilos (about 22.5 lbs). At the end of March he had just barely cracked 20 lbs, so that is very good gain.

I am having some trouble with hospital internet access so updates may be sporadic.

We don't expect to hear anything from the cath lab for a while; they said that we should call them if we don't hear anything by 4:30. Will let you know more as I am able!

An update and a plug

2011-05-31T06:31:00.000-07:00

So, it's tomorrow. We are second case (ugh), which means he will probably go into the cath lab around noon, assuming the first case doesn't go late again.

Unfortunately, Magnus going into the hospital tomorrow means we are going to miss the sendoff for the Bike4theCHF riders at the Golden Gate Bridge tomorrow morning. This year, our friends Jeni and Nick Busta will be joining Nels Matson in riding cross-country to raise funds for the Children's Heart Foundation. Magnus is featured on their fundraising page and was supposed to be there for the sendoff tomorrow a.m. I know most of us don't have a ton of spare cash these days, but if you would like to donate in Magnus's honor, you can do so here, and it's for a very good cause.

I will do my best to keep everyone updated with news as we get it tomorrow!

Next week

2011-05-24T13:42:00.000-07:00

This is the longest stretch Magnus has ever gone without being in the hospital. Not coincidentally, it is also the longest I have gone without updating this blog! But both stretches are now coming to an end.

Magnus's cardiac catheterization is scheduled for June 1. I'm really hoping we'll be first case this time, since last time, frankly, sucked (the first case ran late, so we wound up having to fast Magnus all day until 3 p.m. and keep him entertained in the hospital). But of course, more importantly, we are hoping for good news, or at least, not for bad news.

Magnus has now been on oxygen 24 hours a day for more than 6 months in hopes of controlling his pulmonary hypertension and allowing him to be a candidate for the third surgery he's supposed to have. That's more than 1/3 of his life (he just turned 18 months last week)! This cath is extremely important. We could get either very good news (the oxygen & meds worked & his hypertension is better), very bad news (his hypertension is worse and there's nothing else they can do for him), or, probably most likely, something in between.

From what we can tell from the outside, Magnus has been doing very well. He has been growing and gaining weight, learning new things, and catching up in his gross motor skills (he's getting close to walking). I also feel like he just looks better than he ever has; he looks strong, and doesn't have the puffiness he used to have before. He also has tons of energy, and has been healthy ever since the cold that landed him in the hospital back in January. But who knows? I felt confident that he was doing better at the time of his last cath, right before Christmas, and there had actually been no change. So, we are very nervous.

Mostly Normal

2011-02-07T07:44:00.000-08:00

OK, it's February 7th, and I have not updated this blog since before Christmas. I think that's the blog equivalent of still having your Christmas decorations up in February. And here's a confession: the only reason why I don't still actually have my Christmas decorations up is because I never bothered to put any up this year!

Things have been busy, but mostly uneventful. And I suppose it is indicative of our lives these days that a couple of months I would describe as "mostly uneventful" involved hospital visits for 2/3rds of our household!

First, about a month ago, Iggy got hit by a car while he was out riding his bike. Thankfully, he escaped serious injury, but he had cuts and bruises, and the police who happened to be nearby when his accident occurred called the paramedics, who took him to the hospital. His bike was pretty much destroyed. Luckily, the driver was insured. But it was quite an inconvenience...he was in a significant amount of pain and walking with a cane for almost 2 weeks. But he's now pretty much completely recovered.

Our second hospital experience was just last week. On Monday, Magnus starting coughing and having the sniffles. By Monday night, his nose was very congested, and he was obviously pretty miserable (nasal cannula + snotty baby = no fun for anyone). We didn't really think much of it, though until Tuesday night around 9 p.m. when he woke up crying. Iggy went in to comfort him, and then a minute later, he called for me to come in the room. I could tell from the tone of his voice that something was wrong. Magnus was making weird noises and seemed to be having trouble breathing. Then he started coughing and vomited. We started discussing what to do. My mind was racing...on the one hand, it was of course very scary that he was having trouble breathing. On the other hand, it might just be because he was stuffed up, and I knew that if we brought him in to the hospital, they would admit him, which would mean a night of no sleep for me, and a day of lost wages for Iggy, not to mention that the hospital is just about the least pleasant place to be when you are not feeling well. I thought perhaps Magnus would recover, but the scary breathing would continue. That's when I felt like we had to take him to the hospital. At first, I thought we would drive him there, but then I started to worry about what would happen if he stopped breathing altogether on the way there. The hospital is about a 15-minute drive from our house...that's plenty of time for something to go badly wrong, so we decided to call 911.

Within 5 minutes, half a dozen paramedics were in our house. They put an oxygen saturation probe on Magnus's foot, and his sats were actually fine, even though he was still having trouble breathing. And then we were off to the hospital. Iggy rode in the ambulance with Magnus, and I took the car and met them there (I actually beat them there by a little bit, which was good, because I was able to meet up with them at the ambulance entrance).

To make a long story somewhat shorter, we ended up in the ER at UCSF, and within 10 minute of arriving at the hospital, his breathing was back to normal. One of the pediatric cardiology fellows came down to see us, she spoke on the phone with our regular cardiologist and the attending cardiologist, they all decided we should be admitted, and then after several hours of waiting around for a bed upstairs, we wound up back on our old stomping grounds of 7 North a little after 1 a.m.

We were hoping he would get released in the morning, but I started to get a bad feeling when our nurse reported back that at morning rounds there had been no discussion of us going home. I asked her if we could talk to one of the doctors, but several hours went by with nothing happening. That is, unfortunately, one of the down sides of being one of the wellest patients on the unit...nobody pays much attention to you.

We've spent enough time in the hospital now that we understand how things work, which makes the process slightly less frustrating, but I was still irritated. (Here's a funny aside: being used to "hospital time," Iggy and I were pleasantly surprised when he was released from the ER within a couple of hours after his bike accident. One of us commented on how efficient the ER was, and one of the nurses who overheard us did a double take and said "we don't hear that very often!") I had to leave for work at 11 a.m., and I knew I wouldn't be back in the city until 10 p.m. (and yes, this on top of a mostly sleepless night at the hospital), and since I had to drive to work, I knew that even if Magnus were released sometime during the day, Magnus and Iggy would have no way to get home.

Finally, our nurse managed to get ahold of one of the fellows, who told her that since Magnus had come in on an emergency call, he had to stay a minimum of 24 hours for observation! This seemed absurd to me, but at least now I knew I could take the car to work. Unfortunately, though, Iggy had been planning to go to a show that night that he'd been looking forward to for months (we were planning to have our babysitter stay late that night) and now he wouldn't be able to go.

Then, later that afternoon, the attending doctor came around and said that Magnus actually could go home, even though it hadn't been 24 hours. But Magnus and Iggy had to wait for me to come back from work with the car. Sigh.

Throughout our stay at the hospital, all the doctors we saw told us that we did the right thing in calling 911. With his pulmonary hypertension, any respiratory problems could be imminently life-threatening. And yet...nothing was actually done for him medically at the hospital. His breathing problem resolved on its own and never came back. And instead of being able to be sick in relative comfort at home, Magnus had to be sick at the hospital, where he was poked and prodded and subjected to noisy roommates. I had a night of barely any sleep, and probably not coincidentally ended up catching Magnus's cold. Iggy missed a day of work and missed going to his show. So, you know, knowing what we know now, calling 911 was clearly the wrong decision. But of course based on the information available to us at the time it was the right decision, and if I were in the same situation again, I'd do the same thing.

OK, judging by how much I have written (and this was the very abridged version), I guess the last 6 weeks have been more eventful than I thought. But mostly we have just been living our normal lives. Magnus has finally started getting physical therapy and has been making lots of progress with his gross motor skills. He is now a very good sitter and supported stander. He can pull up from sitting to standing, although rarely chooses to do so. And he's SO CLOSE to being able to crawl, but hasn't quite put together all the pieces of the puzzle. Instead, he sometimes does a funny modified crawl where he crawls with both legs and one arm, but keeps one shoulder on the ground. Iggy calls it the "wounded Marine!"

He also FINALLY got a third tooth this week. His first two teeth came in within a week of one another back in late September/early October, and everyone told us that they would start coming in quickly after that, but all this time he's had plenty of teething symptoms, but no actual teeth. One of the nurses in the cardiac unit told me that cardiac kids frequently have delayed tooth eruption. I tried to see if I could find any other information about tooth delays, but there's not much out there. I haven't been too worried because you can see that he HAS teeth in his gums, they are just taking their sweet time in coming out. So, between his tooth situation, his gross motor skills and his size, he looks like a typical 9-10 month old. Of course, given that he's 14 months, that is not optimal, but it's better than when he was 8 months old and was the size of a 2 month old. We're moving in the right direction.

Well, that was fast

2010-12-22T13:50:00.000-08:00

We're home!

I think that sometimes the speed with which you get discharged is really just a matter of the whims of whatever doctor happens to be in charge of you. This time around, the doctor's whims wanted us out of the hospital, and so we are. Magnus is fine, albeit a bit crabby. He had a low-grade fever this morning (an expected reaction when a foreign object, like titanium coils, is placed in your body) but seems OK now.

And I'm going to take a nap.

"Not bad news"

2010-12-21T21:55:00.000-08:00

We're back up on the ward. Magnus woke up about half an hour after they turned off his propofol IV, and gulped down some sugar water. We had to do a few things to get him adjusted, but now he's back asleep again, and I'm really hoping for a peaceful night! We have one of our favorite nurses tonight, so that's a big plus.

When we got back up to the ward, Magnus's regular cardiologist was here. She had only spoken briefly with the cath team, but she said that she wasn't too disappointed by today's cath. "It's not bad news," she said. "He could have gotten worse." She said that she was hoping to get us off the oxygen, but obviously that's not going to happen until his pressures start to improve. She also said that she was heartened by the fact that they were able to do what they set out to do today in the cath lab. She also laid out a bit of a longer time frame for his next cath, something like 3-5 months from now.

So, yeah, I guess that's pretty much how we're feeling. We didn't get great news, but we're relieved that we didn't get really bad news, either.

All done

2010-12-21T19:41:00.001-08:00

We're in the anesthesia recovery unit right now waiting to see Magnus. We got the call that they'd finished up a little after 7.

The good news is pretty much what you've already heard: the cath itself went smoothly, and they were able to coil off his remaining collaterals in less time than they expected.

The bad news: his pressures are not too much different. However, the doctor who I spoke to on the phone, who was rather pessimistic with me when Magnus had his last cath, said that this may just be because not that much time has passed since his previous cath. The upshot is that he will need ANOTHER cath in a couple of months, and then we will really hope to see some improvement in his pressures. That cath should hopefully also be easier because they will hopefully just be checking his pressures and not doing so many interventions.

We had hoped that this cath would give us good news about his pressures and that maybe then we'd be able to wean him off the oxygen, but I guess not.

The update

2010-12-21T18:01:00.000-08:00

Just called in: everything's going "fine," they're still coiling off collaterals, and will probably be another hour or two. Not sure if this completely rules out unpleasant surprises, but I guess so far, so good!

In the lab

2010-12-21T17:12:00.000-08:00

Sorry for my lack of updates. We finally dropped Magnus off in the cath lab at 3, and then Iggy and I went out for lunch (Magnus was not the only one in the family who had gone NPO all day, so we were starving) and then went to buy him a new carseat, since he's close to outgrowing the infant seat we'd been using for him.

We haven't heard anything yet, but didn't really expect to. Our plan is to call and check in at 6 if we haven't heard back from them by then.

Still waiting

2010-12-21T13:10:00.000-08:00

As expected, the first case is running long, so we have just been waiting here at the hospital and trying to keep our very hungry and thirsty boy entertained. Since he's gone so long without fluids, the nurses made 2 failed attempts to start an IV to give him some hydration. Now we're waiting for the special fancy IV nurse.

It could still be hours before he goes up to the cath lab. Sigh.

Second case

2010-12-20T16:44:00.000-08:00

Well, tomorrow is the big day of Magnus's follow-up cath. He was originally scheduled to be the first case of the day, but today we got a call that he's been bumped back to second case. Being second case is not so much fun, because he has to be fasted for 6 hours before the cath. If he were first case, he'd be asleep for most of those 6 hours, because they start for the day around 9 a.m. Not so if he's second case. The other issue with that is that if the first case goes long, his cath will be delayed, and he'll have to be fasted for even longer. We're not too happy about that, but I guess they wanted him to be second case because they expect it to be a long cath and they don't want to have to rush it.

As a result, we expect him to get started around noon, but it could be later. And then last time it took them about 6 hours in the cath lab. I presume this time it will be a similar time frame, or maybe a bit shorter since they already know what they're dealing with.

As always, we will do our best to keep everyone up to date by posting here, but we probably won't know much ourselves until at least a couple of hours after they start.

On the schedule

2010-12-07T09:58:00.000-08:00

Magnus's cath has finally been scheduled, and will be on December 21st. This is the result of multiple phone calls and e-mails on my part, and I figured out today that I think the scheduling was complicated by the fact that when our cardiologist e-mailed the scheduler, she gave her MY last name, which is different from Magnus's, so they couldn't find his information, blah blah blah. Anyway, we're on the books now. Chances are Magnus will probably still feel lousy for Christmas, and we may even still be in the hospital and/or digesting any possible bad news from the cath, but we're not really big Christmas people anyway. Plus, our babysitter is going to be out of town, so I'd be taking time off work to be with him anyway.

One year

2010-11-27T08:55:00.000-08:00

A lot has happened since I last posted!

My parents came to visit and helped us out tremendously during the week from Magnus's birthday until Thanksgiving. While they kept him entertained and helped us clean the house, we were able to work, take care of the mountain of household tasks that had been accumulating, and train our new nanny! Yes, we finally have childcare again, thank god. I think the two weeks prior to my parents' arrival were the most exhausting of my life, between trying to work full-time, take care of a baby full-time, and having to deal with all the new medications and equipment (for example, I had to call the home health care supply company EIGHT TIMES in order to get Tender Grips, the little bandages that adhere his oxygen cannula to his face).

Magnus had a great birthday. He received many excellent gifts, and now has an enviable stash of toys and books, and plenty of new clothes, too. In addition, my sister initiated, and my mother facilitated, a birthday card campaign for Magnus; we received nearly 100 birthday cards for him! Some of them were from people Iggy and I have never met, and others were from family members, neighbors, old friends, and even two of my former elementary school teachers! My mom and I spent the afternoon of Magnus's birthday reading through those cards with tears streaming down our faces. Even though I know objectively that we have a lot of wonderful support, caring for a sick baby can feel isolating on a day to day basis. I don't see my friends very often anymore; in fact, since Magnus had his G-tube surgery in July, Iggy and I have been unable to go out together at night, since we haven't had a babysitter who knows how to work his feeding pump. So getting all those cards was kind of my It's a Wonderful Life moment, when you realize that you're not alone, and that in fact you have more people rooting for you than you ever could have imagined.

We had a party for Magnus's birthday on Sunday. Thanks to Grandma and Grandpa's babysitting service, I even had a chance to make cupcakes, which other people seemed to enjoy, although Magnus was not too enthused about them. Many friends came, bringing yet more gifts, and Magnus basked in the glow of his many admirers. That was by far the most people he'd ever been around, but he did very well, and only seemed slightly overwhelmed when everybody started singing "Happy Birthday" to him while flashbulbs went off all around him.

Another exciting development that happened this week is that we began the weaning process. The plan is to transition Magnus off of breastmilk and onto Pediasure. I have some mixed feelings about this, as Pediasure is a highly processed mixture of cow's milk, fats and sugars, and has a long list of multisyllabic ingredients. I had asked the dietician who works with his GI doctors about more natural alternatives, and she said that while there were children's formulas made from more natural ingredients, they didn't taste very good, and so were generally only recommended for kids who are 100% tube fed. So, in the end, my desire for a more natural diet for him is outweighed by my desire to no longer spend 2 hours a day pumping breastmilk, and my desire for him to eat by mouth. The dietician suggested that we transition him onto the Pediasure by starting with a bottle that was 1/4 Pediasure and 3/4 breastmilk. To be conservative, I started him with a bottle that was 1/6 Pediasure and 5/6 milk. And then he took one swig of it, made a horrible face, and then instantly vomited. It was, to say the least, disheartening, but we kept trying, and now he seems to tolerate that mixture well, so today I'm bumping him up to 1/3 Pediasure and 2/3 milk. Wish us luck. Anyway, I guess this gives us more impetus to step up our efforts to encourage him to eat solid food, which we've kind of been slacking on of late.

My parents left early in the morning on Thanksgiving day, and we had some friends over for dinner that afternoon. Last year on Thanksgiving, Magnus was 2 days out from his Norwood, which meant that he was in the ICU, completely sedated, "breathing" with the help of a ventilator, his chest was full of drainage tubes and pacer wires, and his sternal incision was still open because he was too puffy for it to be closed. So I wasn't able to hold him, but I was able to look right into his chest and see his heart beating. Iggy couldn't handle seeing him in that state, and since seeing Iggy so upset made it impossible for me to hold it together, we mutually agreed that it was best for him to just spend the day at home getting Magnus's room ready for his eventual homecoming while I stayed by myself at the hospital. So, even though we've had a rough month, this Thanksgiving was dramatically better than last year's, and we didn't have to look too far to find plenty to be thankful for.

Work week

2010-11-12T20:33:00.000-08:00

Well, we made it through almost a whole work week with Magnus at home on oxygen and nobody to take care of him except his parents! I have several nanny interviews lined up for us on Sunday, so I really hope we won't have to do this too much longer, because I am totally exhausted. Missing work is not an option for me, and Iggy has also been trying to work as much as possible, so basically we are all just sleeping less and trying to be as efficient as possible (on top of everything else, I have a job interview next week for which I am supposed to prepare a 15-minute presentation).

I also survived my first solo outing with Magnus and his oxygen tank. We had a trip to the clinic this afternoon for him to get a flu shot and to see his GI doctors. I was nervous about being able to steer both the stroller and the oxygen cart, but it wasn't really too bad, although I did run over one guy's foot with the oxygen. I was also kind of nervous on the drive over, too; when the guy from Apria dropped off the portable tanks, he told us that if we took them in the car they should always go in the back seat, and never the front seat or the trunk. You know, because then it's less likely to explode if you get in an accident. My mind wandered to those "BABY ON BOARD" signs, and I fantasized about making a "HIGHLY FLAMMABLE BABY ON BOARD" sign for our car. But we didn't get in an accident, and we didn't blow up.

Iggy took Magnus out for a walk with his oxygen on Thursday and said that people stared and he felt self-conscious. When I took Magnus over to say goodbye to his nanny on Wednesday morning, I decided to just take his cannula off, because we were only going for a short visit, but I left the stickers on his face that hold the cannula in place and even that garnered comments. "Your baby scratches his face, huh?" one guy said to me. Anyway, at UCSF it wasn't really an issue, since there are tons of people walking around with various medical equipment and whatnot.

Magnus has been adjusting pretty well to being on the oxygen. I'd say our biggest problem is the fact that the adhesives we use to hold his cannula in place have been giving him a pretty bad rash, despite the fact that we attached the stickers to a more hypoallergenic type of bandage. But there's no such thing as a hypoallergenic adhesive for him, apparently. I hope in time his body will adjust to it, because the rash is pretty gnarly, and I feel terrible when I have to change the bandages because it looks really painful. But other than that, it doesn't seem to bother him too much, and as much as I hate to admit it, I think it does seem to give him more energy. It will probably help with his weight gain, too.

Adjustment

2010-11-09T20:50:00.000-08:00

With the oxygen has come a lot of new developments in our lives, and since last night we've been hard at work adapting to our new situation.

We've been through a lot since last weekend, but I think the hardest part of all of this was having to "break up" with our nanny. I called our nannyshare partner family last night as soon as we realized that he was going to have to be on oxygen 24 hours, and broke down sobbing on the phone. I let them break the news to Lilian, our nanny, but called her myself this afternoon, and of course broke down sobbing again. Tomorrow morning we are going over there to say goodbye, and I think it's pretty safe to say that there will be a lot more sobbing. It's a cliche to say that your nanny is like a member of your family, but it's really true. Magnus's love for Lilian was obvious from the way he would start bouncing up and down in my arms after I would ring the doorbell while we waited for her to answer the door. And then she would appear, and he would absolutely beam with happiness to see her. Realistically, I know that part of that is just that he is a very happy and loving kid by nature and he will probably become equally attached to whoever cares for him next, but I know she really loves him, too. And yeah, of course the tears are streaming down my face again as I write this.

We talked about the possibility of her still babysitting for us sometimes, but realistically, there is a language barrier and I don't think we can surmount it enough for her to operate his equipment. Still, I hope we will somehow continue to see her. Maybe someday things will even work out so that she can care for him again.

So during the times today when I wasn't breaking down in tears about having to leave our wonderful nanny, I was scrambling to find a new nanny, and spoke to a couple of promising candidates on the phone and set up some in-person interviews over the weekend. I've also been scrambling to catch up on work, and Iggy has stepped in as super-dad, basically cancelling all his appointments and giving up his work to care for Magnus while we try to find new childcare. Luckily, my parents are coming next week for a brief visit so that gives us a little extra time, and hopefully we'll get everything worked out by Thanksgiving.

With everything going on, another thing we've had to give up on is that we were hoping to go back East for Christmas, but now we're just going to stay here. I mentioned before that the doctor who did Magnus's cath wanted to do his followup cath after the holidays, but then I talked to our cardiologist who wants it done before the holidays. I'm not sure who will win out, or when we'll know, but between that uncertainty and the challenge of trying to fly with a baby who is on oxygen during the holiday rush, it just didn't seem tenable. I think Iggy's mom is planning to come out for Christmas, which would be great, but there are a lot of other relatives we'll miss seeing. Luckily, Magnus is too young to know when Christmas is anyway, so we'll just have to celebrate "Christmas" with the rest of the family the next time we see them.

As far as Magnus is concerned, I guess our first 24 hours on home oxygen haven't been too bad. Dealing with him being tethered to the compressor is somewhat reminiscent of trying to vacuum the house while minimizing the number of times I have to unplug and replug the vacuum cleaner, a challenge with which I am quite familiar. I guess this is one time that having a small house works in our favor! One of the worst things about the compressor, though, is that it's really loud, and of course we have to run it 24 hours a day. Luckily, we can leave it out in the hallway and then shut the door to Magnus's bedroom while he's sleeping which mutes the sound significantly, but the only other rooms in our house that have doors on them are the bathroom and our bedroom, so it's loud everywhere else. But I guess we'll get used to it. Magnus did get fussy and pulled his cannula off a few times, but he didn't seem to be too traumatized by it. The next thing we really have to do is to try to find a stroller that has a big enough basket to hold our portable oxygen tank so that we can take him out for more than a couple of hours at a time. We really want to make sure that his world doesn't get to be too circumscribed now that he's on oxygen and it's harder to take him out.

Oxygen

2010-11-08T18:23:00.000-08:00

Good news: we are FINALLY home (though it took all day, and Iggy has to go back to the pharmacy tonight to pick up his meds because they weren't ready).

Bad news: Magnus has to be on oxygen all the time, for the foreseeable future.

We are pretty devastated. We have to give up our nanny share with the nanny we love, who HE loves, and who loves him. And now we have to scramble to find someone who can take care of a baby who is attached to an oxygen tank. The longest he's allowed to be off the oxygen is for 2 hours.

I was trying to cheer us up, and said to Iggy "hey, remember when we thought getting a G tube was the end of the world? And now it just seems normal." And then Iggy pointed out "it's not just the oxygen, it's what the oxygen represents." Yeah. The fact is, Magnus is not doing well, and now all you have to do is look at the cannula on his face to see it. But between the oxygen and the meds, it's still possible things could turn around for him. Through all of this, I keep remembering the neonatologist who told us when I was 26 weeks pregnant that we should just induce labor and let nature take its course because there was no way I would carry him to term. She was wrong. And this time, his doctors aren't giving up on him, but they are definitely worried. As are we.

Good night

2010-11-08T08:10:00.001-08:00

Magnus had a really good night last night. He woke up a couple of times, but went back to sleep within 30 minutes. Our new space was SO much quieter.

The nurse who's in charge of coordinating home care just came by to tell me that we'll have oxygen delivered later today, so right now the only thing holding us up is his viagra prescription. I've gotten word that that shouldn't take too long, but I guess we'll just wait and see...

Finally asleep

2010-11-07T20:16:00.000-08:00

Not me, obviously, but after getting those 5 hours last night, and then barely napping all day (it wasn't too hard to understand; we were in a bay with two other families who had a lot of visitors all day long, many of whom were small children, plus it was right where the nurses usually hang out and talk, so between all that plus the normal hospital noises of IV pumps and monitors beeping, it was incredibly loud.

Finally, a little after 4, our nurse suggested that we try giving him Benadryl. I told him that we'd given him Benadryl twice last night with little effect, but at that point I was willing to try anything. He immediately passed out and stayed asleep for several hours. When he woke up, though, he was totally freaked out and wouldn't stop screaming. I eventually calmed him down, though, and then he went right back to sleep. In fact, I think he never really woke up, even though he was screaming; he had this glazed look in his eyes the whole time.

We started him on oxygen here in the hospital, and while I hate the idea of having another medical thing to deal with, I can see already how much easier it makes things on his body, especially while he's sleeping. Not only are his oxygen saturations much higher, his heart rate and breathing rate are lower. So maybe being on oxygen at night will also help with the weight gain thing, which continues to be a bit of a struggle.

I'm also happy because I like the nurse we have tonight, and we had a fantastic nurse during the day. Last night we had a nurse that I'm not so fond of. We also got moved to a much quieter bay, which is fantastic. There's only one other kid in here, and he's asleep, so hopefully we're in for a much quieter and more restful night.

Not today

2010-11-07T12:26:00.001-08:00

We're not going home today.

Everyone had been saying we would, but then this morning, the new attending physician who came on duty today came by to talk to me. He said they wanted Magnus to be on oxygen at home.

His oxygen sats have been about the same since his cath, but they're on the low side for where he should be, especially at night. However, having him be on oxygen is pretty life-changing. Luckily, it sounds like now they only want him to be on oxygen at night, which is significantly less life-changing, but still a huge pain for us.

Anyway, I guess that in order to get insurance approval for him to be on oxygen and also for his new medications, we need to go home tomorrow.

Magnus slept for 5 hours last night. Between him not feeling well, and all the light and noise going on in the ward all night, it was pretty much a total nightmare. There's a newborn baby in the bay next to his, and between 3 and 5 a.m. they were trying to do a blood draw on him. As you can imagine, that is not something that anyone can sleep through.

Anyway, I'm at home now, having been relieved by Iggy, and am going to take a nap. Hopefully I'll feel better after I get some sleep.

31

2010-11-06T16:16:00.000-07:00

That is the number of collateral veins Magnus had coiled off yesterday. Apparently, that is an extraordinarily high number for a baby his size, because people keep coming up to me and saying that they heard about it, even nurses from the intensive care unit next door!

Magnus is doing basically OK today, but is not feeling so great. I guess it's normal to spike a fever in response to having a bunch of metal placed in your body, and he has done just that. We've been trying to keep him comfortable with tylenol, but he's been pretty cranky all day. He had his first dose of viagra this morning, and he responded fine (they wanted to monitor him to make sure his blood pressure didn't drop too low after getting it).

As things stand now, I think we're still on track to go home tomorrow, although I hope he feels better by then. He seems to feel better now than he did this morning, but is still not completely himself.

By the way, thank you so much to everyone who has posted comments and e-mailed me to offer help. It really means a lot to us, as always!

Back on the ward

2010-11-05T16:52:00.000-07:00

Magnus came out of the cath lab around 3:30, and I got here just after he did. He was asleep, but woke up shortly afterward. He was cranky (understandably), hoarse, and very thirsty.

I ran into the main nurse from the cath lab as I was arriving and she (along with everyone else I've spoken to from the cath lab) raved about how well he did during the procedure, meaning that he tolerated the anesthesia well and all the procedures went smoothly.

The cath doctor just came by to talk to me, too. He reiterated Magnus's issues, but said that he thought he could probably take care of all the rest of his collaterals during his next cath, and that he wants to schedule that for after the holidays. He also said that we would know "within a fairly short time frame, maybe 12 months" whether this would fix his problem. That seemed funny to me, because Magnus is not yet 12 months old, so that is literally a lifetime in his case, but I guess it's not really so long in the scheme of things.

He said the worst case scenario, if Magnus's pressures didn't come in line, was that his Glenn shunt would be taken down, and he would go back to post-Norwood. He said that people can live a pretty long time like that, maybe 20 years, before heart failure and transplant. He then pointed out that even in the best case scenario, all these surgeries are considered a bridge to heart transplantation, although that may be "60 or 70 years out" (that is the most optimistic scenario I've ever heard from a cardiologist, but hey, who knows?)

Anyway, in the meantime, it looks like we are here until Sunday (at least) just because with everything they did to him they expect him to feel crappy and be feverish for at least a couple of days. The cath doc also said that they weren't sure what would happen with his sats right now, because they coiled 2 populations of veins, one that was increasing his blood oxygenation, and another that was decreasing it, so it'll be unclear which one wins. Right now they have him on an oxygen cannula, but we'll see how long that lasts once he really wakes up.

Definitely stent

2010-11-05T14:30:00.000-07:00

Just called the cath lab to check in; they are almost done coiling off his collaterals and were just going to do one more, and then they're definitely putting a stent in.

More information

2010-11-05T12:48:00.000-07:00

I got off the phone with Magnus's cardiologist a little while ago.

He's basically got three problems:
-Collateral veins between his aorta and pulmonary artery
-A slight narrowing of his left pulmonary artery
-Also, collateral veins somewhere else that I did not write down the location of

Today they're going to coil off some, but not all, of his collateral veins. They can't coil them all, because right now he's depending on them for his circulation and if they got them all he'd have very low sats. But they want to get them all eventually, so we're going to be back in the cath lab again in 6 weeks or so.

In addition to this, he's going to need to be on viagra 3 times a day to lower his blood pressure.

They may or may not put a stent in his pulmonary artery to address the narrowing. If they don't do it today, his cardiologist says he will "probably" require it eventually. The downsides of putting the stent in are one, that it won't grow with him, and will eventually need to be removed, which is difficult; and two, that if he has a stent in he'll need to be on an additional anticoagulant drug, Plavix, as well as another drug to counteract the effects of Plavix on the stomach (just when he finally seemed to be growing out of his reflux issues, sigh).

Anyway, the additional medications are an inconvenience and all, but the news of today has potentially grave implications. As his cardiologist put it, "this is big." She said she's had patients who have had these complications before and who have done fine, but it is far from assured that these fixes will work. I didn't think to ask her what the time frame is for knowing if he's getting better, or if there even is one. Well, we've lived with plenty of uncertainty before, and now we just have a little more.

I asked her if this would affect his eligibility for the Fontan (his third staged surgery). She said that if the drugs and coils work, no, but if they don't, yes.

For now, they're going to do what they can do today, and we'll be in the hospital at least overnight because he'll be getting viagra and they need to see if he'll tolerate it.

Check-in

2010-11-05T12:00:00.000-07:00

I just called the cath lab to check in and got an update. The cath itself is going fine, but they did find that the pressures in his superior vena cava were quite high, which is what has caused his abnormal head growth. He said that they also found a number of collateral veins. They aren't sure yet what they're going to do about it. They can coil off the veins, but he said that that wouldn't totally fix the problem, and that it may be better to treat him with medications. So, the cath doctor is going to consult with our cardiologist and maybe the cardiac surgeon to figure out what to do. He said they'll probably be there for another couple of hours, though.

I guess it's good that they figured out what's going on. It's not so great that it seems to be something not easily fixed. But I guess at least they do have some options.

No news

2010-11-05T11:02:00.000-07:00

We dropped Magnus off in the cath lab a little before 9, and still haven't heard anything back. They said they'd call if they were going to do any interventions, so I guess we're hoping to hear from them soon.

Cath tomorrow

2010-11-04T19:10:00.001-07:00

Well, I've been so busy I never even had the time to post to say that we got to go home from the hospital on Monday! I think Magnus probably should have been discharged on Sunday, but anyway, we got out, and then I was so behind on work that I had to grade papers and write lectures instead of watching the Giants win the World Series.

I've continued to play catch-up all week, and maybe it's been good that I've been so busy, because I haven't really had time to worry about this cath tomorrow. The best case scenario would be that they find something minor wrong and are able to fix it. I suppose maybe the second best scenario would be that they don't find anything wrong, although something is clearly causing his lowered sats and increased head growth. The thing I'm really worried about, though, is that they'll find something wrong that can't be fixed. Something really wrong. But I'm trying not to dwell on that possibility.

Anyway, we don't have too long to wait now. He's due at the hospital at 6:45 a.m., and I think he'll probably go into the cath lab around 8. From there, I estimate it'll take a few hours. I'll post any news as I have it.

Ahead of schedule

2010-10-30T18:03:00.000-07:00

We were scheduled to come in to the hospital next Friday for Magnus's catheterization, but apparently he just couldn't wait and we are here a little early! The good news is that he's doing fine now, and I fully expect us to be sent home in the morning (though we still have to come back on Friday).

On Thursday morning, I noticed that Magnus was having some stomach trouble. I'll try to avoid going into too many vivid details here! I sent him to his nanny share with 2 extra outfits, just in case, but he came home in the same clothes I'd sent him in, and on Thursday night he seemed about the same.

Later that night, though, he got to be extremely fussy, and Iggy decided to disconnect him from his feeding pump around 1:30 a.m. because he seemed to be having such an upset stomach. Magnus kept Iggy up most of the night, and then when I came on Magnus duty at 4:30 a.m., he was super fussy and looked dehydrated to me. I offered him a bottle and he wolfed it down. And then another and another. But it was passing right through him. It occurred to me that maybe we should take him to the doctor, but I knew that the only real treatment for diarrhea was hydration, so I just kept giving him bottles.

When the clinic opened at 9 a.m. I called and made an urgent care appointment for that afternoon, because he was supposed to see his early interventionist that morning. Iggy went in to work early. But Magnus was rapidly getting worse and worse. All of a sudden he was completely soaking through a diaper every 20 minutes. I called the clinic and asked if I could bring him in right away, and they said OK. I fired off an e-mail to his cardiologist saying that I thought we'd probably be admitted, gathered up a few essentials, and we headed to UCSF.

The drive there takes about 20 minutes, but it felt a LOT longer. Magnus was very quiet, so I kept putting my hand on his head to see if he was still moving. He was. Then, the parking garage was completely full. I had to drive around for another 20 minutes looking for a space, while Magnus continued to be scarily quiet. At one point, I just stopped the car to get out and take a look at him. He didn't look good. He was lethargic and pale, with sunken eyes. While I was driving around the parking garage, I missed a call from the urgent care clinic saying that since he was a heart patient with severe diarrhea, they would automatically want to give him IV fluids, so I should just take him to the ER. Of course, I didn't get the message until we were already in the waiting room at the clinic, so they took his vitals there and then sent us across the street to the hospital.

Once we got to the ER, there were a million people in the room, and they immediately started trying to put an IV in him. Even under the best of circumstances, Magnus is a hard stick. First of all, he's a baby, and then he's a heart patient who has already had a lot of his best veins tapped out in previous hospitalizations. Add severe dehydration to the mix, and I was not optimistic. So everyone set to work trying to locate the best vein whisperers in the hospital. Meanwhile, one of the cardiology fellows came down to assess him and said that not only did he need to be admitted to the hospital, but that given the vehemence of his stomach problems, he needed to be in an intensive care unit.

With all this excitement was going on, Magnus hadn't had anything to drink for over an hour. He had actually drunk his entire day's allotment of bottles at home, so the only thing I had with me for him was a vial of frozen breastmilk I'd grabbed on my way out the door. I asked the nurse if it was possible to just give him some pedialyte by mouth while we were waiting for the IV, and eventually someone rustled some up, and wow, he started drinking like crazy. The hospital pedialyte comes in 2 ounce bottles, and he was sucking them down in less than a minute. I only had one nipple, so when I had to wrestle an empty bottle away from him to switch out the nipple on the new bottle, he would start crying and holding onto the bottle as hard as he could. Normally, he won't even drink pedialyte, but he drank 13 bottles of it while we were down in the ER.

It took TEN tries by four different people to get his IV started. Needless to say, this was a distinctly unpleasant experience for all parties involved. Finally they got an IV in his foot, but then it turned out that whenever he moved his foot, the IV would clog up. After all that, he wound up never even getting any IV fluids!

After a few hours in the ER, we got moved upstairs to the pediatric ICU. He's always been in the cardiac units previously, so we'd never been on that floor, but we ended up having some of the same nurses we'd had before. Going up to the floor from the ER was a surreal experience. The pediatric unit was having a Halloween party, so we walked down a corridor full of people dressed up in costumes and Halloween decorations.

Magnus got a small amount of pedialyte through his G tube, but he mostly made up for his dehydration with continued vigorous drinking. In fact, he drank so much that by the middle of the night, he was looking puffy to me. In the morning, when the doctors did rounds, I learned that in his time in the hospital, Magnus had a positive fluid balance of one liter, meaning that even with continuing to have diarrhea and some vomiting, he had taken in a liter more of fluid than he'd put out, which is pretty amazing, considering his size and the fact that he'd taken nearly all of that by mouth!

By this morning, while he was still having tummy trouble, it seemed more like the garden-variety sort. The doctors said they wanted to keep him one more day, but he was clearly on the mend so we started him back on breastmilk. Unfortunately, he seems to be having some trouble handling the breastmilk, which is making me a little nervous about our prospects for getting out of here tomorrow morning.

This afternoon we got moved up to the cardiac ICU. He doesn't actually need to be in an ICU but they have us here because he might be contagious so they don't want him mixing with the general patient population. It's actually a lot nicer in here because we get our own private room with a TV! So we didn't even have to miss the World Series (although boo that the Giants lost). And tonight I will only have to be awoken by ONE crying baby!

Anyway, everyone keep your fingers crossed that we'll get out of here tomorrow. If not, I guess at least it's a good thing that he's way too young to care about spending Halloween in the hospital!

Cath scheduled

2010-10-16T20:37:00.001-07:00

Magnus's cardiac catheterization will be on Friday, November 5th. I'm not sure exactly when because the case order doesn't get decided until the last minute. We definitely hope to be the first case of the day, because he'll have to be fasted for several hours beforehand, and it's easiest to do that while he's asleep. Also, the last time he had a cath, he was first case and actually got to go home from the hospital the same day. However, that cath was a more straightforward procedure just to check things out in preparation for his Glenn, so I'm not sure if avoiding an overnight stay is a possibility again this time, but it would be awfully nice.

In preparation for the cath, I had to bring Magnus in for a flu shot last week. Magnus's pediatrician wanted him to get it well in advance of his going into the hospital. He's pretty amazing; he screamed when the needle went in, of course, but in less than a minute, he was over it and was smiling and happy when we went to go visit some friends who work at the hospital afterward, showing off his TWO new teeth. Yes, he went for more than 10 months with nary a tooth, and then just one week after the first one popped through, another one started to come in, too!

Tuesday is going to be Magnus's 11-month birthday, which means that his real birthday is coming up soon! As you may recall, we never had a baby shower for him, so we're excited to finally have a real party to celebrate, although actually planning a party seems totally overwhelming to me right now, since I continue to be incredibly busy at work. Somehow, we'll get it done, though.

It's obviously a huge milestone for Magnus to celebrate a birthday. I don't like to dwell too much on how grim things seemed at this time last year, but suffice it to say that Magnus has brought tremendous joy to our lives and we have a lot to celebrate. And yet, perhaps the most exciting thing for me about Magnus turning one is the prospect of weaning!

I breastfed Magnus for a few weeks initially, but when we stopped using his NG tube, I switched to exclusive pumping so that he could take fortified breastmilk with formula powder mixed into it. Yes, I have been exclusively pumping for almost a year! When you count setup and cleanup time, I spend about 2 hours every day pumping breastmilk. But beyond the time committment, the hardest part of pumping has really been the feeling of being shackled to the breastpump! Every few hours, I have to find a private place to pump, which for the most part has meant that I haven't ventured too far from home. Then there's the physical discomfort, and the, uh, anatomical changes that mean that although I now fit into my pre-pregnancy pants again, I still can't wear most of my pre-pregnancy shirts. And I've had to deal with fun situations like students knocking and knocking on my office door while I pump before a 4-hour lab class, knowing that I am inside, and wondering why I won't open the door! So as you can tell, I'm pretty excited to finally feel like I have my life and my body back!

One more time

2010-10-04T11:48:00.000-07:00

Magnus had a cardiology appointment this morning. Unfortunately, his head has continued to grow a bit, plus his oxygen saturations were on the low side, in the low eighties instead of the high to mid-eighties. The upshot is that this means a trip to the cath lab and another brief hospital stay sometime in the next month or so.

I suppose this is not good news, but it's not the end of the world, either. The thinking is that both his increased head pressure and low sats are probably due to either collateral veins or a narrowing of something in his circulation, both of which can be pretty easily fixed with a cath. If it's not either of those things, then they can at least do some poking around and measure his pressures. There is a possibility that they wouldn't find anything from the cath, in which case we just wouldn't do anything.

We're not exactly thrilled that he has to go back to the hospital, but the head size thing has been hanging over us for a while, plus I have noticed that he's seemed a bit bluer lately, so it would be really nice if the cath could fix these problems and we didn't have to worry about them anymore.

He also had an echo at his cardiology appointment today, and that looked good, so everything else seems to be OK. He did have a cold last week (the second one he's had in his life), but has otherwise been doing well. He's getting better at sitting up on his own, and even got his first tooth last week, on the same day as our 2nd wedding anniversary!

Last week, Magnus also saw a feeding therapist, which was really helpful for us. We've been trying to get him interested in solid foods for 6 months now, with no real success, and were feeling pretty discouraged about the whole thing. The feeding therapist said that he was somewhat "orally defensive," (though it seems to me that it is rational to be "defensive" about strangers putting things in your mouth?) and suggested that we just put him in his high chair for a short time each day and let him play with a few kinds of food. So far, this mostly just means that he ends up with pureed squash in his ears and hair, but occasionally he will lick food off a spoon. She also suggested that we buy some tools to stimulate the area around his mouth and to help him practice chewing, so those are on order.

To finish up, here's a cute video from this weekend. Arlo's mom and I have known each other since we were 5 years old, and now we live a few miles from one another and have sons who are 2 months apart in age. And yet we have been really awful about taking the time to get together. I think that's going to change, though, especially seeing how much fun those two have together!

Normal life

2010-09-15T10:13:00.001-07:00

What do you know, we've gone almost 2 weeks without any sort of medical appointment! (The last thing we had was his head ultrasound, which will have been 2 weeks ago as of tomorrow, and his next appointment is with his GI docs next Friday). Although his head size, among other things, is still a nagging worry in the back of our minds, life has been pretty normal.

Magnus has continued to make steady progress with his weight gain, and along with that has also been making progress with his gross motor skills. He's still extremely delayed for his age in that department, but interestingly seems to be progressing in a weight-appropriate, rather than age-appropriate, manner. By that I mean that now, at almost 10 months, he weighs about 14.5 pounds, which is the 50th percentile for weight for a 4 month old, and he is doing things like starting to be able to sit on his own for 10-20 seconds and to bear all his weight on his legs. These are the types of gross motor skills that typically develop around 4-6 months. So we're hopeful that as he continues to catch up weight-wise, he'll also catch up in his gross motor skills.

In a related development, Magnus has finally started receiving early intervention services. For the past two Fridays, an early interventionist has been coming to our house, but we're actually going to start seeing a different early interventionist this week who has a bit more expertise with delays related to health problems. Apparently, the early interventionist he saw before was assigned to us before the agency providing services had gotten his paperwork, so the early interventionist showed up at our door not knowing anything about him, despite the fact that we went through all that testing! Anyway, I could write a lengthy screed complaining about all the bureaucratic ridiculousness of getting him early intervention services, but I fear it would be very uninteresting so I'll just say that I'm glad he is finally getting services.

Meanwhile, Magnus continues to be his usual charming self. He's very into toys that make noise these days, which means that he loves rattles and his toy xylophone. He also loves to grab people's faces; last night he stuck his finger up my nostril and scratched me so hard that I got a nosebleed! Time to trim his nails again, I guess.

Good news

2010-09-03T19:03:00.001-07:00

Magnus had his head ultrasound yesterday morning. It went very smoothly, starting with the great street parking space I scored right in front of the building with money still on the meter!

The ultrasound tech remembered Magnus; she had done his head and abdominal ultrasounds on the day he was born. The scan itself was really easy, she was able to do it without him even getting out of the stroller. One other nice thing she did was that she kept saying what a good boy he was being, even though he was a little fussy. It's happened more than a few times now that other medical personnel have expressed their frustration when Magnus has gotten fussy during a procedure, which makes the whole thing really stressful, because not only am I trying to comfort him (often under circumstances where he is justified in acting fussy) I also feel like I have to comfort the technician, as well! So, I appreciated that she said that, but even more than that, I appreciated the fact that as we were leaving, she whispered to me that his ultrasound looked normal.

Of course, I knew that the scan needed to be read by the radiologist to get the official word, which came back from our pediatrician today. Indeed, his ultrasound was normal.

The caveat is that this doesn't necessarily rule out problems with increased pressure in his brain; all they can see from an ultrasound is whether his ventricles are enlarged. However, the fact that they are not is very good. The plan now is to continue to monitor his head growth; if it continues to be overly rapid, we will have to do some other sort of more invasive testing like an MRI (bad because he would have to be fully sedated for this) or a CT scan (bad because it involves exposure to a high dose of radiation). Hopefully neither will be needed.

Back from vacation

2010-08-31T15:54:00.000-07:00

Well, obviously I've been quite remiss in updating this blog. In a way, that's a good thing, because I haven't had too many things I've needed to write about. As you have probably gleaned if you ever look at my Flickr page, we did in fact end up getting to go on our vacation, and didn't have to make any mid-vacation trips to the hospital. Magnus's G tube is healing nicely and he's gaining weight at about the rate they want him to.

I haven't mentioned it before here, but I left my old job at the end of June, and am now working as a biology instructor/lecturer at three different colleges. My new, more self-directed work schedule is something I'm still getting used to, but it's a good change, and one I wanted to make in my career. One result of this is that my schedule is now both more and less flexible than before: it's more flexible in the sense that I am only in class 11 hours a week, and other than that my time is my own, but less flexible in the sense that I really can't ever miss class. For most people this is not such a big deal, but when you have a kid with a chronic illness, you have a lot of doctor's appointments, and they are made at the doctors' convenience.

Anyway, the upshot of this is that last week, I got hired at the last minute to teach a Monday class, which meant that I had to miss two of Magnus's doctor's appointments yesterday: a cardiology appointment in the morning, and his 9-month pediatric visit in the afternoon. Luckily, Iggy's work schedule is also pretty flexible, and he was able to take Magnus to his appointments (along with a page-long typed list of questions from me!).

Magnus seems to be doing mostly OK, but both his cardiologist and pediatrician were concerned about one thing: his head size. It is normal for children who have undergone the Glenn surgery to have larger than average heads; the Glenn changes the circulation such that the blood pressure in the upper body is higher than in the lower part of the body, and as a result, the head tends to enlarge in the weeks following the surgery. However, it is not normal for the head to continue to grow faster than the body at this point in Magnus's development, 5 months post-surgery.

There is a possible benign explanation for this: in malnourished people, it is normal for the body to preferentially partition calories to the brain, and in the case of children, to brain growth, because the brain is the most important organ in the body. Although Magnus is now getting an adequate caloric intake, it is possible that his body is still prioritizing brain growth over other parts of the body.

There is also a less benign explanation: the pressures in his lungs could be too high, causing blood to pool in the brain inappropriately. Since I didn't get to talk to our cardiologist yesterday, I didn't get to ask her if or how this could be fixed, if it were the case.

The cardiologist wanted to just see him again in another month to follow up on his head growth, but the pediatrician was sufficiently concerned that she ordered a head ultrasound for him, which I've scheduled for Thursday morning. I actually spoke with the pediatrician on the phone after the appointment, and she told me something interesting; I had forgotten that he'd undergone a head ultrasound on the day he was born as part of a research study on in utero brain development in babies with CHD. Anyway, I guess that ultrasound came back "normal," which is nice to hear, because research has shown that most of the neurological problems seen in kids with CHD are a result of abnormal brain development before birth.

So anyway, this upcoming head ultrasound is my big worry right now. A lesser concern I had was that I've noticed in the past couple of weeks that Magnus prefers to use his left hand for fine motor skills, like putting his binky in his mouth. He can do it with his right hand, and I've seen him do it, but 9 times out of 10 he chooses to do it with his left. It's not normal for children to show a handedness preference this early, and unfortunately, left hand preference in particular can be indicative of brain injury. Iggy asked the pediatrician about this, and while she wasn't too terribly worried, she did give us a neurology referral. When I spoke with her about it later, she said it was up to us whether we wanted to see the neurologist, but that at some point, most kids with HLHS do have some sort of neurological evaluation given everything they go through and that we may as well get hooked in to neurology now. This makes sense to me, and I am curious to hear what the neurologist thinks, but of course, this means even more doctor's appointments!

In the past week and a half we've had four doctor's appointments: a followup with the surgeons to check his G tube, a followup with his GI doctors to monitor his weight gain and reflux, and the two appointments on Monday. Each of these appointments usually takes about 2-3 hours not including transportation time. Now we have this ultrasound on Thursday, and within the next month we have follow-up appointments with the surgeons (to learn how to change out his G tube; after that I don't think we'll have to see them anymore unless something goes wrong), the GI docs (to keep monitoring the weight gain), and the cardiologist (to follow up on his head). Plus we'll probably have this neurology appointment, and I think Magnus is finally going to start occupational and physical therapy soon, which I am excited about, but it is yet another time committment.

I had thought that things were going to settle down for us medically after the Glenn, but so far that hasn't really been the case. But I'm still optimistic that once Magnus has caught up in his weight gain, all we'll need to do is see the cardiologist every couple of months and go for regular checkups. Until then, it's definitely a good thing that both Iggy and I have flexible work hours!

We're home!

2010-07-28T07:00:00.000-07:00

Actually, we got home yesterday afternoon around 1 p.m. I had thought we were going to get out of the hospital on Monday, but then on Monday morning, they came and talked to me about some of his lab results. His hemoglobin was low, so they wanted to give him a blood transfusion. They also said that they had to adjust his lasix dose since he is now consuming so much more fluid.

I wasn't crazy about him getting a blood transfusion, but I'd noticed that his oxygen saturations were a little low over the weekend, which could be a result of the low hemoglobin. I also wasn't sure when they had drawn these labs...was it when he still had the really bad edema from the IV fluids? I couldn't remember. Being in the hospital really messes with your brain. Every day is the same, so it's hard to keep track of time, plus sleep and sensory deprivation, along with boredom, conspire to rob you of your mental acuity. I was a little confused about what was going on, but was willing to do whatever the doctors wanted to get out of there. Iggy wasn't there on Monday morning, because he'd been up at a wedding in Sonoma County on Sunday evening. Originally, we were all supposed to go to the wedding, but Magnus and I had to cancel due to his hospitalization.

But then a couple of hours later, the doctor came back and said that he had changed his mind, and that Magnus didn't need the blood transfusion. I was relieved, but also felt guilty for not arguing more about the blood transfusion in the first place.

Anyway, in parallel with the confusion about when we were going to get out of the hospital and what we needed to do to make that happen was the renewed potential that we might get to go on our trip after all. As you may recall, we were scheduled to go on a 2 week trip to the East Coast leaving this Saturday, the 31st. When we had our original consult with the pediatric surgeon, she said it would not be a good idea to travel so soon after surgery. But on Sunday evening, our regular pediatrician stopped by to see Magnus, and remarked on how well his recovery had gone, and said "and you still get to go on your trip!" "Do we?" I asked. Everything seemed to be going fine, but I'd assumed that cancelling the trip altogether was our only option.

The next day when I met with the surgery nurse practitioner I asked her about traveling, and she just shrugged her shoulders. "Why not?" she said, "if anything happens, they have hospitals on the East Coast."

But we still hadn't gotten clearance from the cardiology team. When the cardiology fellow came around to talk to me, I asked him and he was noncommittal. "Let's talk about it tomorrow," he said.

That night, Iggy stayed over at the hospital while I slept at home, and that night, our regular cardiologist came around to check on Magnus. Iggy asked her about traveling, and she indicated that she thought it might be OK, but wanted us to go for a shorter trip, and to skip our plans to visit Iggy's grandfather, who lives on a small island in Maine that is accessible only by boat.

But then the next morning, when the cardiology fellow came to talk to us, they told us that the team's recommendation was no travel for a month! I told him that our regular cardiologist had indicated that she thought it was probably OK, and in the end, she actually ended up coming in and talking to them in person, and so as it stands, we are tentatively planning to go on a shortened version of our trip next week, as long as Magnus continues to do fine with his tube and a cardiology appointment we have on Monday goes OK. I really, really, really hope it does, not just because we would love to go on this trip, but also because at this point my parents have already spent a fortune on booking and rebooking air travel, and I don't want it to be for naught!

So anyway, we got out of the hospital yesterday with probable authorization to go on our trip. The biggest challenge since then has been adjusting to life at home with the tube and figuring out how the pump for his overnight feedings works. There are definitely pluses and minuses to life with a tube. In the minus category: Magnus is still clearly not quite adjusted to his new feeding volumes, so he fusses quite a bit at mealtimes, and had one big puke last night. For the moment, we are sticking with the feeding regimen we were assigned in the hospital. I know I said it was stupid, but there is something to be said for trying to get Magnus on a more normal feeding schedule (i.e. eating 5 times a day instead of a dozen or more times), and I'm hoping maybe this will help "train" his stomach. I don't think we'll do it forever, though, especially since we don't plan on asking his nanny to do tube feeding with him. There's also the fact that we have all this new equipment to deal with/worry about, although I suspect that as we get more accustomed to it, it won't be that big a deal.

In the plus category: the obvious answer is that we don't have to worry about feeding him enough calories every day, but to me, really, the biggest advantage is that we don't have to give him his meds by mouth! Before the tube, the worst part of my day, no matter how bad a day, was always the two times a day I would give Magnus his Prevacid. I haven't tasted it, but it smells awful, and I had to give him a large volume of it. Now I can just squirt it in the tube, with no tears or screaming! The other big advantage of the tube is that with continuous overnight feedings, last night, Magnus only woke up once during the night, at around 3 a.m. To say that this had never happened before is a huge understatement! Before, on a good night, Magnus would sleep 3 hours at a stretch. On a bad night, it could be as little as 45 minutes all night long. We also finally moved Magnus into his own bedroom, and out of ours. Because he woke up so frequently before, it made more sense for him to sleep in a co-sleeper attached to our bed, but our bedroom is tiny, and the co-sleeper made it a tight squeeze, and there was no way we could also fit his feeding pump etc. in there, too. I was worried that I would miss sleeping next to him, but to be honest, it's nice to have all that space back in our bedroom. I can finally open the drawers on my nightstand for the first time in months! Not to mention that the possibility of one day sleeping through the night, formerly a crazy fantasy, now seems like it might actually happen soon.

Day 4

2010-07-24T10:06:00.000-07:00

And things are moving along pretty well. He's still a tiny bit puffy, but looks much better than yesterday. And the really good news is that he's been tolerating all his tube feedings very well, and hasn't thrown up or anything at all. He's occasionally gotten a bit fussy during feedings, but I think that's mostly because the dietician has him on a really stupid feeding schedule.

Ordinarily we feed Magnus many small meals; he usually eats every 1 to 2 hours during the day and consumes 1-3 ounces at each feeding. This is how he chooses to eat, and I think it's because when he has bigger meals, it aggravates his reflux. We told the dietician that our plan for when we go home is to feed him ad libitum from the bottle during the day, and then do continuous tube feeding at night to bring him up to his goal volume for the day. I guess the dietician just completely threw this plan out the window, because what she ordered for him was 4 ounce feedings every 3 hours; he takes whatever he will from the bottle, and then he gets the rest as a bolus through the tube. This sounded completely nonsensical to me, because why would he tolerate such large feedings through the tube when he won't tolerate them by mouth? Luckily, though, thanks to the fact that everything is always running behind in the hospital, in practice, he ends up getting all his tube feedings late, so it ends up getting spread out reasonably well. Anyway, I don't really care what we do here as long as he's not too miserable and we can get out of here soon, and it seems that we are well on track to do so.

His nighttime feeding plan was equally ridiculous. The idea was that his last bolus feed during the daytime would be at 5 p.m., and then he would start continuous feeding at a very slow rate, 5ccs (about 1/6 of an ounce) per hour. Of course that meant that he went for 3 hours with no food, and then got hardly anything through the tube, so of course he got hungry and fussed. Basically, after stuffing him full of food all day, they were starving him at night! So I gave him a bottle and he went to sleep. Luckily, the nurses have been pretty cool about our subversion of the plan.

Anyway, like I said, despite the stupid feeding plans, Magnus has been tolerating all his feeding well, and has been gaining weight. Fingers crossed that this continues!

Day 3

2010-07-23T16:29:00.000-07:00

As I write this, Magnus is getting his first feeding of milk through his G tube. They started using the tube this morning, but have previously only given him pedialyte through it. They've also been letting him drink milk by mouth today, which seems to have improved his mood significantly, although he's still not back to his usual happy self.

Yesterday was a pretty rough day. He was mostly asleep, but when he did wake up, he screamed inconsolably. It took a long time for them to get orders from the doctors for him to get any pain medication. First they gave him oral morphine, which didn't seem to do anything for him, and then they decided to give him IV morphine, at which point they discovered that his IV had infiltrated, and his poor left arm was swollen up like a balloon. However, once they got the bad IV out he was immediately much more comfortable and fell asleep...so deeply asleep that he barely stirred when they put in his new IV!

Since he wasn't allowed to eat yesterday, they continued to give him IV fluids, but I noticed that he hadn't been peeing much. This made them worried that he was dehydrated, so they tried giving him more fluids, but he still didn't pee...he just got all swollen and bloated. The bloating got worse overnight, and I spoke about it with all the medical personnel I encountered, but nobody really seemed to take it seriously until this morning, when our regular cardiologist stopped by. She got the team to order him some diuretics, and also told us to prop him up in bed, since most of the swelling was in his face and neck. Nobody knows why he got so swollen, but they said maybe from the IV fluids. Since then, they've given him doses of IV lasix, and he's looking a lot better, but still much puffier than normal. So hey, at least now he looks fat!

I stayed over at the hospital with him last night, and I actually got a pretty good amount of sleep. Magnus slept almost the whole night through, thanks to my asking the nurses to give him morphine every 4 hours. I just wanted him to be comfortable and rest, and also didn't want to have to worry about him pulling anything out while I was asleep. I am especially worried about him pulling out his G tube, which is possible. When we go home, we'll be able to keep the tube covered up and out of temptation's way by dressing him in onesies and one-piece outfits, but here in the hospital, he just wears a diaper, and the nurses like everything to be out in the open where they can see it (which makes sense...part of the reason why we didn't realize for a while that his old IV had infiltrated was because they had covered it up with a lot of tape and a "spiderweb" bandage to prevent him from messing with it or pulling it out).

So he seems to be doing better now. He hasn't had any pain medication since 5 a.m., and while he hasn't seemed very happy, he hasn't been too fussy, either. I think getting to eat again has helped a lot. I also suspect that he'll be a lot more comfortable once we finally get all the excess fluid off him. I myself had terrible edema after giving birth thanks to my preeclampsia, so I know how uncomfortable it is.

Out of surgery

2010-07-22T09:12:00.000-07:00

We just got the call from the surgeon that everything went about as well as could be hoped. They were able to do the surgery laparoscopically (which basically just means he won't have another big scar, but we were relieved about that), and they were able to place a button type G tube right away (sometimes they have to place a different type of tube and then switch it out for a button later). We're still in the waiting room now, but they said we'll get to go up and see him in 5-10 minutes (which means 10-20 minutes or more in hospital time).

Well, we're here!

2010-07-21T14:56:00.001-07:00

We checked Magnus into the hospital at around 1 p.m. We are back in our old cardiac unit, and they managed to get Magnus one of the best rooms in here--we only have one roommate instead of two. I feel kind of sorry for that roommate, though, who looks to be a boy around 9 years old. I think he's getting out of here in a day or so, though.

Not much has happened so far other than chatting with the nurses and with our pediatrician, who stopped by. They don't even have Magnus hooked up to the monitors or anything, but they're about to draw blood and try to simultaneously put an IV in him. If they can't get the IV in with the same stick as the blood draw, they're going to put the IV in tonight. The whole reason why we're here in the hospital a day early is so he can get IV fluids while he's fasted overnight to make sure he doesn't get dehydrated.

After we got here, Magnus napped for a while, but of course then one of the fellows came to look at him and woke him up by prodding him with a stethoscope. Now he's just hanging out and playing with the many toys we brought from home. Yet again, I'm very thankful he's too young to understand what comes next.

It's on

2010-07-16T18:54:00.000-07:00

Needless to say, the past couple of days have been pretty stressful for Iggy and me. Not only were we not sure what we wanted to do about Magnus's surgery, I was very worried that he and I would have trouble agreeing about what we wanted to do. The more Iggy thought about the surgery, the more concerned he became about it, and he started talking about trying NG feeds again.

We hadn't come to any resolution, and then yesterday, Magnus's cardiologist e-mailed me and said she wanted to talk to us. We agreed to talk to her on the phone this morning, and resolved to make a decision after that.

If you are a regular reader here, you have probably learned by now that I am not the type to blindly follow the advice of any medical practitioner. But we have something pretty close to complete faith in Magnus's cardiologist. She has always tried to work with us when we wanted to do something differently, and we know that she cares about him deeply and has his best interests at heart.

She was quite blunt with us. She said that putting off Magnus's surgery for another few weeks would be very dangerous, and that it would make the surgery sufficiently risky that there would be a real chance that he could die. And well, after she said that, it was pretty obvious what we had to do. We also discussed the possibility of revisiting doing the surgery endoscopically, and she said that she didn't think it was a good idea in general for cardiac patients, and especially in his case.

We check in to the hospital on Wednesday, and if all goes according to plan, we should be there about a week.

So, this means that we have to cancel our vacation, which is a huge disappointment for us. My parents rented a house at the Jersey Shore, and the plan was that we'd spend the first week there with my parents, my sisters and their husbands, and my new nephew I haven't met, as well as my aunt and uncle and several of my cousins, none of whom has met Magnus. Then we were going to drive up to Massachusetts and see Iggy's side of the family, including Iggy's brother, who still hasn't met Magnus, and a bunch of friends. And finally, we would drive up to Maine with Iggy's mom for Magnus to meet his great-grandfather.

We probably can make the trip back East as soon as Magnus is healthy enough to travel, but it won't be the same. There will be no week at the shore with my whole immediate family around. And we while everyone else is there without us, we will be at home recovering from yet another surgery, or perhaps even still in the hospital (that would make for maximum self-pity potential, wouldn't it?).

So yeah, we're pretty hugely bummed out. And yet, after we'd made the decision, we both felt oddly relieved. We'll get through the surgery, and then we'll finally be able to fatten him up, and won't have to worry every day about how much he is eating, and we'll go back East later, and even though it won't be the same, Magnus will still get to meet everyone.

p.s. Oh yeah, and then we gave him a bath and weighed him this evening, and the little stinker had gone and gained 80 grams in the last 2 days! Unfortunately, it's too little, too late.

Surgical Consult

2010-07-15T08:23:00.001-07:00

Yesterday afternoon we had our consult with the surgeon who will place Magnus's G tube. I'd have to say it did not go very well.

We found out about the appointment through a voice mail message last week, saying that we were to come in at 2:30 on July 14th. They did not leave a phone number, and didn't tell us if a surgery date had been scheduled, so that was our number one question going into the appointment.

So our appointment was at 2:30, and they told us to arrive at 2:15. Since we're not suckers, we showed up and signed in at 2:25. And waited. We weren't called into a room until 4 p.m. A nurse practitioner greeted us, and we asked her if she knew if Magnus's surgery had been scheduled. "I'll find out," she said. She disappeared into the hallway and we never saw her again.

Finally, the surgeon came in, along with someone else who never introduced herself. We asked her if the surgery had been scheduled, and she told us that we had been scheduled for next Thursday, July 22, at 7:30 a.m. "Are you sure they didn't tell you?" she asked, "because I find that very strange." I assured her that the surgery date had not merely slipped our minds.

We've been planning to leave for a big family vacation on the East Coast on July 31st, so that was the first thing we asked about. The surgeon said that Magnus was likely to be out of the hospital by then, if everything went smoothly, but that it would not be a good idea to travel with him so soon post-op, setting up problem number one: if we go ahead with Magnus's surgery as scheduled, we will have to cancel our vacation. It would be one thing if this were just a trip for fun, but this was going to be the big opportunity for Magnus to meet a bunch of his relatives. If we cancel, I don't know when we'd have a chance to do it again, probably not until next summer at the earliest. My sister had a baby in February, and I still haven't gotten to meet him, either.

When we mentioned this to the surgeon, she was very clear that she thought that waiting was a bad idea. However, she also made it clear that she didn't know anything about the particulars of Magnus's case, and that the urgency in scheduling this surgery was at the request of his cardiologist. When we met with his cardiologist last week, she did say that she hoped he could have the surgery before we left, but didn't seem quite so emphatic about the dangers of postponing it.

The next thing we talked about with the surgeon was Magnus's reflux. When we mentioned that reflux had been a major factor in his eating problems, she told us that if he had reflux, that he should undergo a fundoplication when he had the G tube inserted. I told her that I had major reservations about the fundoplication surgery, and that I didn't want to consign him to a lifetime of problems with gas and an inability to vomit. She stared at me for a moment, and then just said "well, that's my recommendation."

My next question was why he wasn't a candidate for the endoscopic surgery, and she said she didn't know, that someone else had made that determination. I asked her what kind of G tube he would be getting, and she said she didn't know, that it would depend on how things went in the O.R. She also said that the determination of whether the surgery could be done laparoscopically or not would be made in the O.R. Really, she wasn't able to tell us much of anything except that the date for his surgery had been set.

So now we are faced with the decision of whether or not to reschedule his surgery. Medically, of course, the answer is that he should have the surgery as soon as possible. But I'm not sure exactly how urgent the situation is. He has been doing pretty well with eating lately, and has been steadily gaining weight, albeit at a slower rate than we would like to see. And that could change at any time. His reflux is a moving target, and it seems like as soon as we find a combination of meds that work, they stop working. He's been malnourished for a long time now, will three more weeks really make a difference? I don't know. And if this surgery is so urgent, why has it taken more than a month to schedule it? Anyway, we have a big decision to make, and we need to do it soon.

Waiting for the G tube

2010-07-10T10:40:00.000-07:00

As you have no doubt intuited from the title of this post, we are still going through the process to get Magnus a G tube. First, we had to wait for insurance authorization to do the upper GI study, which finally happened this past Wednesday. Magnus had to drink a barium solution and then lie flat on a table while they took x-rays of his abdomen to determine if the G tube could be placed endoscopically or not. I was really dreading having to force him to drink barium, since he has emphatically rejected anything we try to put in his mouth that is not breastmilk. As it turned out, he actually did take a few swigs of the barium before deciding it was awful (maybe because he'd been fasted for several hours beforehand), and the worst part of the study was having to pin him down on the table so he would lie flat...he screamed and screamed and didn't want to be held down. At this point, I am pretty accustomed to having to do horrible things to Magnus, and I did what I usually do, which is to talk to him in a soothing voice and tell him over and over again that I am very, very sorry. This seemed to annoy the radiologist, who snapped at me that the procedure was not painful. Well, duh, I know that x-rays aren't painful, but it's still pretty unpleasant to pin your child down while he's screaming.

Luckily, it was over pretty fast...I think the whole thing took maybe 10 minutes.

We were hoping that the study would show that his anatomy was conducive to having his G tube placed endoscopically, which means a less invasive surgery and a shorter hospital stay. We found out on Friday that they determined based on his study that he was not a candidate for the endoscopic surgery, although they didn't tell us why. It could be because the placement of his stomach is unusual, or it may be because he has surgical scars in the area they'd want to go through. We have a consult with pediatric surgery this coming Wednesday, but no surgery date yet. I'm not sure how long of a hospital stay this will be...our cardiologist said about a week, but that sounds really long to me. Some kids spend less time in the hospital than that after open heart surgery, and this is far less invasive than that, even with having to do the more invasive procedure. Hopefully we'll get a better idea on Wednesday.

We've really been trying to push things forward as fast as possible, not just because he continues to not eat very well and not gain weight, but also because we've scheduled a 2-week trip to the East Coast leaving on July 31st. Magnus is finally going to get to meet a lot of his aunts, uncles, and cousins, as well as seeing more of his grandparents and other relatives he's already met. If we can't get this surgery scheduled soon, it's going to have to wait until mid-August, when we get back.

On Thursday of this week, Magnus had a cardiology appointment. His oxygen saturations were a little lower than they had been, which is probably just a fluke, but could potentially be one more thing to worry about. Oxygen saturation monitors tend to be a little temperamental, which is probably what was happening, but his cardiologist mentioned that it could be a result of collateral veins, which would be not a great thing. Luckily, he's going to be in the hospital for several days for this G tube surgery and hooked up to monitors all that time, so if there really is a problem with his saturations, it should become evident. Magnus's cardiologist also wanted to talk to us about the risks associated with the G tube surgery. The risks are all basically related to the anesthesia, and while he's never had problems before, it's always a possibility for something Very Bad to happen when you have general anesthesia, particularly when you're a baby with a serious heart defect. Iggy felt like she was telling us this to scold us for not trying harder to get the NG tube to work, and I suppose she probably was. It is still frustrating, for us, and probably also for his doctors, that something that feels like it should be so simple, getting a baby to eat, is so difficult that we're going to have to go through another surgery and another hospital stay, followed by months or maybe even years of dealing with feeding pumps and feeding tubes and various medical equipment. But we really have tried, and it just didn't work.

Anyway, Magnus has now woken up from the nap he was taking when I started writing this, so I'll have to leave it at that for now, but I'll try to write a little more later about our experiences with his reflux issues, which I think might be of use to other parents who have kids with feeding issues.

Assessment

2010-06-29T14:03:00.000-07:00

This morning we took Magnus to be assessed by a doctor to see if he was eligible for a state program that provides therapies (physical, occupational, language, etc.) to babies with developmental delays.

This was actually the second stage of evaluation...last week a social worker came to our house to do what they called an "intake assessment." She'd confirmed what we suspected to be the case, which was that he was doing fine with everything except eating and his gross motor skills. And then today, the doctor he saw pretty much confirmed that assessment.

I suppose this is both good and bad. It's good to hear that given all the abuses his nervous system has been through (heart bypass, general anesthesia, chronically low oxygen saturations), he appears to either be on track or even advanced in his fine motor skills, language skills, social interaction and cognition, at least to the extent that these things can be assessed in a 7-month-old. The finding that he is delayed in his gross motor skills was not really bad news, since we already knew it, and we're glad that this qualifies him to get some extra help, although working another weekly appointment into our schedule is going to be a pain.

We are still waiting to hear back about where he will receive services, but we're hoping it will be at a particular center where they have an integrated therapy program that includes a feeding clinic. It's obvious to everyone that Magnus's gross motor skill delays are directly related to his feeding problems. He's too skinny, thus he has poor muscle tone, thus he's not strong enough to sit up or start to crawl. The eventual G tube placement should certainly help to bulk him up, but I definitely would love it for him also to have therapy that could possibly help him take more by mouth, since the goal is to try to get him off the tube as soon as possible.

Speaking of the G tube, progress there has been slow. Apparently, our insurance company has been dragging their feet in granting approval for the imaging study that needs to be done in order for the process to be initiated. In the meantime, Magnus has been eating pretty well for him, but only gaining weight at about half the rate we would like for him to achieve.

Basically, other than that, life has been pretty normal! Iggy's mom is in town visiting, so Magnus has been happy to have lots of grandma time. This weekend, we took him to a party at the beach, and while he seemed a little overwhelmed by all the people, he eventually got over it and made a few new friends.

So now we just have to wait to hear about the G tube and figure out how we're going to fit his therapy into our schedule. I guess we'll manage somehow!

Update

2010-06-24T19:47:00.000-07:00

I'm totally exhausted right now, but we have heard from so many supportive friends and family in the past week since I wrote about our trials with NG feeding, I wanted to post a quick update, and to say that things have settled down a lot and that we're all doing OK!

On Monday, I e-mailed the GI doctor we'd seen last week to say that we wanted to go ahead with the G tube. She wrote me back and said that she would help us with that, and that the first stage in the process was to set up an imaging study to see if Magnus could have a G tube inserted endoscopically (this would depend on the location of his stomach within his ribcage and whether any of his surgical scars would interfere with endoscopic placement of the tube). That still hasn't been scheduled, but we're hoping this will happen early next week, and are hopeful that the surgery can happen in the next couple of weeks.

We still haven't met with the GI doctors about the G tube, but based on very helpful comments other parents left on this blog, I think that Magnus can be successful with the G tube without doing a fundoscopy.

Like I said earlier, things have been pretty normal this week. The Prevacid seems to be working better on Magnus's reflux than the Zantac was, and he has been eating relatively well. Unfortunately, it's not quite enough to get him where he needs to go. It's definitely been hard to give up on the idea of a child who can meet all his caloric needs "naturally," without the use of a tube. But what really drove home the need for a tube for me was when I sat down with a growth chart and discovered that even if Magnus gains an ounce every single day, which is a lot, nearly double the rate of weight gain that a normal baby would have at this age, it will take him four months to even get on the growth chart, which would put him in the 5th percentile for weight. The realization that even this modest goal was going to be wildly ambitious for us without being able to give supplemental feedings really made it kind of obvious that this is what we need to do, even though it will require another surgery and hospital stay, and will be some extra work to maintain.

Anyway, things are OK, we're OK, and we want to just get this over with quickly, and start fattening our boy up soon.

NG Nggggggh

2010-06-19T20:53:00.000-07:00

It's been an eventful couple of days.

At Thursday's cardiology appointment, we requested a GI consult, and somehow were magically able to get an appointment the following day. Our GI appointment was mostly pretty uneventful. They approved the cardiology plan to supplement his feedings via NG, and gave him a prescription for Prevacid, since it seems clear that the Zantac isn't really working for Magnus's reflux.

We had decided to wait until Friday night to insert Magnus's NG tube, partly because Iggy had to work late Thursday night, and also because we figured it might be best to try out his new nighttime NG feeds on a night when I didn't have to go to work the next day.

So when I got home from work Friday, we got down to business. We swaddled him, we prepared all the bandages to keep his tube in place, we got out the tube, and I took a deep breath and started to insert it.

Inserting an NG tube is really pretty straightforward. You stick the tube in one nostril, and then just keep pushing it until it gets down to the stomach. Except the first time, it didn't work. The tube just got all bunched up in his throat, so I pulled it out and tried again.

The second time, the tube went all the way in, but then he immediately vomited it back up. Ditto for the third time. By then, all three of us had had enough. Magnus was screaming his head off, and Iggy and I were about ready to cry, as well. I sent a panicky e-mail to our cardiologist, and decided that we could bring him to the urgent care clinic the next day to have a nurse insert the tube. But it was pretty unnerving that we would be unable to reinsert it.

Our cardiologist e-mailed me right back and was very reassuring. Take him to urgent care tomorrow, she said, and you guys can get more training next week. It was exactly what I needed to hear...a little pat on the head.

So this morning, I brought Magnus in to urgent care to have the tube inserted. Iggy had to go to work, so I was by myself. With great struggle, the nurse and I managed to get the tube inserted, but she had to call another nurse to help check placement, and Magnus got so upset during the insertion that he screamed until he turned blue, and then vomited up a bunch of bile afterwards. I think even the nurse was a little bit traumatized. She suggested that we stick around for a little while to make sure he was tolerating the tube, and we did. He seemed to be OK, although not very happy, so after half an hour or so, we went home.

I think he was mostly asleep on the drive home, but as we pulled into the garage, he started to fuss. As I gathered up our things and tried to comfort him, I accidentally dumped the contents of my purse on the garage floor, and somehow, that was the thing that sent me over the edge. Magnus was crying, and I was crying, and I just felt completely devastated, knowing that Magnus was going to have to live with this horrible tube that was nightmarish to insert, and then probably uncomfortable for him all the time. Even as a 6-week-old, he managed to pull his tube out on a regular basis, and I imagined that surely things couldn't be any better now. Since we couldn't do it ourselves anymore, how often was I going to have to take him to the doctor's to have the tube re-inserted? Was I going to be driving him to the clinic several times a week, skipping out on work, and having to shell out a $10 co-pay, plus $6 for parking, in order to have this incredibly horrible thing done to him?

I managed to pull it together and bring him inside. I put him down on his sheepskin to play, and he actually cracked a smile and seemed to be doing OK. I left him there because I was way overdue to pump breastmilk, so I sat down to do that. About 10 minutes into the process, I noticed that Magnus was fussing a little bit. His back was turned to me, so I couldn't see what was going on, so I just talked to him and hoped he would settle down, but he didn't. I stopped pumping and went over to check on him. And wouldn't you know, he had pulled his NG tube entirely out. The outside part was still taped to his face, but the part that was supposed to be in his stomach was just flapping around freely.

At this point, it became clear to me that an NG tube just wasn't going to work for us. We had gone through so much to get this tube inserted, and then it didn't even last 2 hours! There's really no way you can prevent someone from pulling out an NG tube, short of taping over their entire nostril, preventing them from breathing. Or keeping them in a straightjacket. Neither of these options seems particularly desirable.

I sent an e-mail to the cardiologist saying that the NG tube was just NOT working out, and that we would have to move on to other options next week.

What other options do we have? Well, it seems that we really only have one. Magnus could have a permanent feeding tube surgically placed in his abdomen, a G tube. While this involves another surgery, it can be done endoscopically, and typically only requires patients to stay in the hospital for a day or so.

The issue there is that a G tube can make reflux worse. Since we think that reflux is a big part of the reason why he's not eating enough now, that's a big problem. For this reason, GI docs often recommend that babies with reflux who have G tubes placed also undergo another simultaneous procedure called a Nissen fundoplication. This typically cures reflux, but comes with its own set of possible complications, including problems with gas, digestive problems, and most alarmingly to me, it makes it impossible to vomit.

So basically, while the G tube sounds very attractive to me, I'm scared that he won't tolerate it without the Nissen fundoplication, and the Nissen, quite frankly, terrifies me.

I don't really know what to do. It feels like we have no good options...the NG just isn't working, the G tube seems like it would create as many problems for him as it would solve, and the status quo of limping along with weight gain certainly isn't satisfactory either. So for now, I'm drinking a big glass of wine and saying to myself that we'll figure it out next week.

Back on the tube

2010-06-17T13:43:00.001-07:00

Well, it's official, Magnus is going to be an NG tuber again, at least for a couple of months.

Even though he's started to pick up his eating, it's not enough to get him caught up on his growth. The dietician we met with wanted us to have him on NG feeds all day long, but we talked her down to letting him eat by mouth during the day and then making up what he needs to get to his goal volume for the day at night.

Hopefully this means we won't have to worry about his growth any more, but I'm very nervous about how he's going to do with the tube now that he is so good at grabbing and pulling on things! Hopefully he'll get used to it and leave it alone.

Feeding issues

2010-06-08T03:29:00.000-07:00

Magnus had a cardiology appointment yesterday morning. I guess that was the longest (6 weeks!) he's ever gone without seeing a cardiologist!

We had been worried about this appointment, mostly because of Magnus's weight. After his Glenn surgery, his eating and weight gain dramatically improved. But all of that seemed to come to a screeching halt at the beginning of May. All of a sudden, he didn't want to eat anymore, he was fussy all the time, and his weight gain leveled off. We attributed the fussiness to teething, although he still doesn't have any teeth.

And then, two and a half weeks ago, he came down with some sort of virus. His symptoms were oddly diverse: conjunctivitis, diarrhea, and a cough, but when I took him to see the doctor, she said it was probably all caused by the same virus. He never got really sick, but his eating got even worse, and he actually started losing weight. He finished off the month of May lighter than he'd been when it started, and since he's been growing, he just looks so terrifyingly skinny.

So, we were nervous about going to see the cardiologist. Nervous, because we knew she was going to want us to put his NG tube back in, but I was also nervous that his weight loss and fussiness could be attributed to a problem with his heart. Luckily, that latter possibility was not the case, and cardiac-wise he is doing just fine. That leaves us with the eating.

What would be so terrible about putting the feeding tube back in? Well first, even when he was a tiny baby, he was a champion at pulling his tube out. Now that he's stronger and has better fine motor control, I shudder to think how often we'd have to replace that tube. Second, the tube seems to be uncomfortable for him. He would often gag on it, and he would frequently just scream the whole time we were using it to feed him. This made feeding an extremely slow process, which leads me to problem number three, which is that the tube is inconvenient. It's a bunch of extra equipment to worry about and in his case is much more time consuming than feeding by mouth. And fourth, he'd have to go around with a tube on his face! This might sound trivial, but I guess one of my coping mechanisms in all this has been to strive to live our lives as normally as possible. A baby with a tube on his face is NOT NORMAL and is visible to the world as a SICK BABY.

But really, my biggest frustration with all this is that a tube won't really do anything to fix his feeding issues, it will merely circumvent them. As things are now, Magnus typically only eats one or two ounces at a time, and then he turns his head away or pushes away the bottle. If you try to get him to eat more than that, he screams. I don't know if it's from reflux or gas, or just him feeling full, but it feels wrong to me for the solution to be to force-feed him through a tube.

But I don't have an alternative solution. We just started adding probiotics to his food on Sunday evening in the hopes that it would improve his diarrhea (which has now been ongoing for 17 days) and maybe generally improve his bowel function and appetite. He then ate fantastically on Monday morning, but dropped off during the afternoon and evening and ended up having another meh day of eating.

These feeding issues are so frustrating...all last month, I've felt like I was fighting with him all day to get him to eat, and then because he eats such small meals, he usually wakes up every 2 hours during the night. And then lately, he won't even eat at night, but we feel like we have to get up with him to at least try.

Anyway, if Magnus doesn't turn things around right away, we have to go back to the cardiologist's next Thursday and he'll be back on the tube. I'm going to keep trying with the probiotics, but I'm not terribly optimistic. One positive thing, though, was that Magnus was actually in a really good mood all day yesterday, despite the fact that we had a very long doctor's appointment that included an echocardiogram, an EKG, and a blood draw. Between the "teething" and being sick, it had been a long time since he'd had such a cheerful day, so maybe those probiotics are doing something after all.

There Will Be Blood

2010-05-18T09:25:00.000-07:00

I don't remember if I've mentioned this here before, but Magnus likes to scratch himself. He is prone to rashes on his face and he will scratch himself until he tears his skin open if we let him. We try not to let him, but he is usually too fast for us. I cut his nails several times a week, and we put socks on his hands when he's sleeping and when he's in an especially itchy mood, but he can't live his whole life with socks on his hands...he needs to be able to play with his toys and develop his fine motor skills. As a result, our boy usually has an impressive collection of scratches and scabs on his face and head.

Adding to this drama is the fact that one of the medications Magnus takes is aspirin, which thins the blood. So when he scratches, this boy BLEEDS, sometimes quite impressively.

And then lately we have added teething to the mix. I have known other babies with a scratching problem, but Magnus is the first one I've heard of who scratches his gums and makes them bleed.

Anyway, yesterday, Magnus had his 6-month checkup with his pediatricians. Since I work right across the street from the pediatricians' office, and since Iggy stays home with Magnus on Mondays, we agreed that Iggy would bring Magnus in the car and I'd meet them in the waiting room. Their trip was uneventful until shortly after Iggy pulled into the parking garage and Magnus started screaming. When he went to retrieve him from his carseat, he found that Magnus had badly scratched his gums and that his face and hands were covered with blood! His actual wounds were minor, but it was quite a scene.

After we cleaned him up with paper towels and water, we had our appointment, which was mostly pretty uneventful. Weight gain continues to be a struggle, but I was pleased to see that he'd grown almost 2 inches in the last 2 months, so he's catching up linearly, at least! As I expected, the pediatricians recommended that he be evaluated for developmental delays so he can get physical or other therapy to help catch up if needed. There are definitely a few areas where I think he could use a little extra help, especially his gross motor skills and strength, so this is a good thing. I guess we'll be setting that up sometime soon.

Magnus was very charming with his doctors and demonstrated his smiling and laughing quite a bit for them, as well as his ability to use his legs to scoot around when he's lying on his back. I think he liked the fact that the table was covered with that paper stuff and that the paper made a noise when he moved around!

And then it was time for shots. Magnus got 3 injections and 1 oral vaccine, and he was none too happy about it. After he was done, I picked him up to console him, and after I'd held him for a few seconds, both Iggy and I noticed that one of his injection sites had bled so much that it saturated the band-aid and made it fall off. There was blood all over Magnus's leg, my hand and arm, my shirt, and a nice little puddle on the floor that made the bottom of my shoe all sticky. Luckily, I was wearing black so it wasn't too noticeable. The nurse put on a new band-aid, Magnus settled down, and we all went home.

Another funny element to all this is that Iggy and I have been joking for a couple of weeks that Magnus is a vampire baby because he hates it when the sun is in his eyes. I notice it when we are outside, but it is even more pronounced in our house: we have a skylight in our dining room, and whenever we pass through the beam of light while carrying him, he lets out a yelp of displeasure. So I guess the bloody mouth and hands just adds to the joke!

So that was April

2010-04-27T20:00:00.000-07:00

It's been a while since I last updated this blog. Since I last wrote, Magnus:

-Turned 5 months old (on the 19th)

-Figured out to roll from back to front and front to back

-Finally figured out how to do a push-up

-Tried his first solid food (rice cereal mixed with breastmilk...not a great hit)

and most importantly

-Has been very healthy and grown a lot!

Magnus is still a very skinny boy, but he's finally passed the 5 kilo mark, and is continuing to gain about an ounce a day. He's also getting taller and is growing out of a lot of his clothes these days, which means he's also growing into a lot of the cute outfits people got us when he was born.

We had a cardiology appointment yesterday, and everything looked good: his oxygen sats were good, his heart and lungs sounded good, and his cardiologist said we could decrease his medication further, so now he's only on one dose of diuretic per day. His next cardiology appointment will be in early June, and that one will be a bit more involved. He'll have to have some bloodwork done, as well as an echocardiogram and an EKG. So, that's not going to be any fun, but if everything still looks good, our next appointment after that won't be for another 3 months!

So really, everything is going about as well as we could possibly hope. Despite that, I still worry a lot. I worry about what will happen with Magnus's health in the future, and I worry that his growth and developmental delays (though extremely minor) will translate to problems later in life. And everything we've been through has left Iggy and myself both a little bit raw. We find ourselves becoming emotional at random moments (like last week, when the Stevie Wonder song "Overjoyed" started playing on my iPod and I had to skip it because I was about to start crying. In fact, just thinking about it now makes me feel like crying!)

But despite all that, life feels pretty good these days. Magnus is mostly a pretty happy boy and he smiles and laughs often. He loves being kissed and tickled and sung to. Everything we've been through has been totally worth it.

Back home

2010-04-07T19:23:00.000-07:00

As expected, we got the all-clear to go home around 8 a.m. However, we ended up not leaving until around 11 because of various administrative stuff that I will not bother to go into. But Magnus had a very nice afternoon at home. My parents are in town visiting from the East Coast, which was a very good thing, because I seem to have caught the cold we've been passing around so I was able to nap all afternoon while my parents watched him. Anyway, all in all, this was a pretty easy hospitalization.

An abundance of caution

2010-04-06T16:48:00.001-07:00

The bad news is we're back in the hospital. The good news is that it's not serious, and if all goes according to plan we'll be home tomorrow.

On Friday, we had noticed that the top of Magnus's incision from his last surgery was somewhat redder than it had been. By Saturday morning, it was redder, raised, and seemed to have some pus in it. I e-mailed a photo of it to his cardiologist, who forwarded it to the surgeon who said that it looked like breakdown of the suture (normal) that was causing a bit of inflammation. They prescribed oral antibiotics and told us to clean the wound out with betadine, bandage it, and keep an eye on it.

On Sunday it was looking a little better, but then by yesterday afternoon, it had started oozing a little bit, and on top of that, he was showing symptoms of a mild cold. Iggy had been sick since Friday, so we weren't surprised, but we were a little nervous, so this morning, I e-mailed his cardiologist again and said that we wanted to bring him in. She squeezed him in at the clinic this morning, and she said she thought he looked better, but also wanted him to be looked at by one of the nurse practitioners who works with the surgeon. Our regular N.P. was busy with an emergency case, so we saw a different N.P. whom we'd met before but didn't know well. She also said she thought it looked better, but the surgeon, Dr. Azakie, was in a cautious mood and wanted him to be admitted to get IV antibiotics.

So here we are. He's had a dose of IV antibiotics and they cleaned his wound out and dressed it. In the course of cleaning it out, they opened it up a little bit so they want to make sure the wound looks "dry" tomorrow before they send us home. They also took some blood to do a white blood cell count (to check for inflammation) and it came back normal, which is great.

While we're not happy to be back at the hospital, it is kind of nice to have the monitors tell us how well he's doing! His oxygen sats are in the low to mid-80s, much higher than when he left the hospital. I had been a little worried about his sats since they lowered his diuretic dose a couple of weeks ago, but they're perfectly fine! And everyone has been impressed with how much weight he's gained. So hopefully, this is just a little blip and we go home tomorrow.

Post-Glenn

2010-03-29T15:54:00.001-07:00

It seems like life has been more hectic than ever in the past couple of weeks, what with being back at work and having out of town visitors and taxes coming up and our car conking out and requiring expensive repairs. But I am having a momentary lull at work and so wanted to post an update!

Magnus had his follow-up cardiology appointment last Monday. They did an echocardiogram (not so fun, he was very wiggly, but it went pretty fast) and everything looked good. His cardiologist told us that her goal is to transition him completely off diuretics, which means that eventually, his only medications will be aspirin and maybe zantac if he still needs it! This was surprising to me and very exciting! And she went ahead and told us to reduce his diuretic dosage from 3 times a day to 2 times a day. It's not a huge change, and yet this makes things tremendously easier for us. For one thing, I don't have to remember to pack his medication for him when he goes to the nanny's. For another, twice daily medication means that we can give his meds at the civilized hours of 7 a.m. and 7 p.m. when he's usually awake anyway, as opposed to before when we had to give him medication at 11 p.m., which was not terribly conducive to getting him to sleep soundly at night.

In addition to the meds being easier, Magnus's weight gain has really taken off since the Glenn, and especially in the last week or so. His post-Glenn physiology gives him a slower metabolic rate, making it easier to gain weight, and his cardiologist also mentioned to us that his diuretic, Lasix, tends to dull the appetite, and we did notice that his eating really improved after we switched to twice-daily meds. The last time we weighed him, we found that he had gained 200g in a 3 day period...that's almost half a pound! He's still tiny for his age, but if he can keep this up, he'll actually be on the growth curve for weight in a couple of months, for pretty much the first time since he was born. He's a bit closer to the curve in his length and head circumference, so maybe he'll catch up on those even sooner.

Magnus's next scheduled cardiology appointment is not until the end of next month. We may end up having to come in sooner if there are any problems, but if not, that will be the longest he's ever gone without seeing a cardiologist in his entire life!

Life at home

2010-03-21T14:04:00.000-07:00

This week has really flown by since we got out of the hospital. We went home early on Saturday, and Magnus continued to be pretty fussy for his first few days at home, which made life kind of difficult because we had to go back to our regular work routines. We had a few really bad nights where he would wake up every hour or so. But I would say that as of around Thursday, Magnus was pretty much back to his old self. We posted a couple new videos showing that our happy guy is back.

On Monday, Magnus had his 4-month pediatrician's appointment. We see two pediatricians: a pediatrics resident and the doctor who supervises her. I like this arrangement because it's kind of nice to have two different perspectives on what's going on, and I like both of our doctors individually. Anyway, I think their expectations for Magnus were fairly low given what he's gone through, but we spent much of the appointment assessing his achievement of various developmental milestones, and impressively, he's more or less on track when it comes to most things. The one thing he's definitely lagging on is doing a push-up (but we're not even letting him try to do one right now because he's not supposed to strain his chest muscles until his incision is fully healed). Unsurprisingly, he also hasn't rolled over yet, but again, we don't want him to right now anyway.

So, things are pretty much back to normal around here. In a way, it's hard to believe that Magnus had open heart surgery less than 3 weeks ago.

And then tomorrow, it's our good friend Julianne's turn. Julianne has a different heart defect from Magnus, Ebstein's Anomaly, but her doctors are treating it with the same 3-stage surgical sequence. Julianne's a tough girl, and I feel confident that she'll do great tomorrow, but I'm sure her mom Clare and the rest of her family would appreciate if you stopped by her blog to offer your support, as well as sending your prayers, positive thoughts, good vibrations or whatever ethereal support you have to offer their way!

Going home!

2010-03-13T10:18:00.000-08:00

We got the all-clear a little after 8! He's had his dressing changed and an EKG done, and now we're just waiting for cardiology to "come take a look at him" and then we're out of here!

Bloodwork looks good!

2010-03-13T07:58:00.001-08:00

His bloodwork looks good, so I'm pretty sure we're set to go home!

Waiting to hear

2010-03-13T07:17:00.001-08:00

Magnus had a good day and a good night. He's been off oxygen and on all oral meds and looks good. The nurse practitioner came by yesterday to check him out and said that she thought that was the first day he looked like he had turned a corner.

They sent me over to the pharmacy last night to pick up all his discharge medications, because the special pharmacy we have to go to is closed on the weekends.

So basically, everything so far looks good, and it all comes down to his final bloodwork. They took the sample around 6:30 a.m. (this time it took FOUR sticks to get a sample) and they say it takes about an hour for the results, but there's usually a little lag, so I'm hoping to know maybe around 8?

I hope we can get out of here in a timely fashion, then. Even though the hospital operates 24-7, things happen more slowly on the weekends and at night, so I'm bracing myself for some frustration.

So far, so good

2010-03-12T12:53:00.000-08:00

I am pleased to report that Magnus has continued to not do anything that would extend his hospital stay. They're transitioning him back to all oral medications today (and he gets to ditch that yucky scalp IV, yay!) and weaning him off oxygen at some point, and he just has to do OK with all of that, NOT spike a fever, have his cultures from yesterday continue to turn up negative, and have a normal white blood cell count tomorrow. And then we're free! I'm trying not to get my hopes up too high, though, since that's quite a few things that all have to go our way.

48 hours

2010-03-11T17:49:00.000-08:00

So the good news is that Magnus's white blood cell count this morning was back to normal and his temperature has also been normal. But the bad news is that since he "spiked a temp" earlier, they need to let the cultures they took this morning grow for 48 hours to rule out infection.

So, the earliest we could go home is Saturday. However, there are a few things that could stymie this plan: he could get another fever, the cultures could turn up positive at some point, or the doctors could just decide that he needs a 7-day course of IV antibiotics (he is now on day 3). But we're keeping our fingers crossed that none of that happens and we get out of here Saturday.

Testing, testing

2010-03-11T12:47:00.000-08:00

So, the doctors came to look at Magnus this morning, and given his elevated white blood cell count of the last two days, they were concerned about the fact that he had "spiked a fever," despite the fact that 38 degrees is not much of a fever. They ordered a few tests, and also put him back on oxygen, "just in case," which is kind of silly, but whatever,I'm confident that he can come back off it easily.

They just took some more blood to check his WBCs again (it took 3 sticks to get a blood sample), and they did another urine catheter sample, so the poor guy really went through the wringer this morning, yet again.

But then just now, the nurse checked his vitals again, and his fever is gone. So who knows what's going on? Oh, and in the meantime, those IV antibiotics he's been on for the past 2 days have given him thrush, diarrhea, and a fungal diaper rash.

Oh, I also forgot to mention that I almost ripped the dietician's head off this morning when he came over to discuss the fact that Magnus was not meeting his weight gain goals while in the hospital and that they might want to keep him here longer because of that. Um, yeah, he's not eating well because he feels lousy, and he's burning a ton of calories because he's getting poked and prodded and stabbed at all hours of the day, and you think keeping him in the hospital LONGER is going to help? He seemed to back down when I showed him my excel spreadsheet containing Magnus's weight measurements at least twice a week ever since he was discharged from the hospital on December 17th, and he realized that we are on top of things.

Anyway, I was pretty upset this morning. It just seemed like everything about the hospital was making him sicker and sicker and the doctors just wanted to keep him here longer and do more invasive testing, and it just never felt like it was going to end. But actually right now I feel OK...I think it's because Magnus has been showing that those smiles this morning were no fluke. Even though he was feverish, Magnus was really back to his old self this morning, and just seemed much more comfortable than he has for the past week. Somehow it all doesn't seem so bad as long as he seems to feel OK.

Morning update

2010-03-11T08:14:00.000-08:00

Magnus has a new nurse this morning, one he hasn't had before, and she was concerned that he seemed fussy and felt a bit hot. She asked me if I thought he could be teething, and I guess it's possible, although he is about a week shy of 4 months, which is a little early. His axillary temperatures had been normal, but she took his rectal temperature, which is more accurate, and it came back as 38 degrees C, or a little over 100 degrees F. Obviously not great news since we are worried about infection issues. However, the nurse said she thought that the low grade fever and elevated white blood cell count could be due to teething...if she can convince the docs that this is the case, I think maybe we could still get out of here tomorrow. But, I kind of have a sneaking suspicion that they will want to keep him...

In more positive news, we finally got a smile out of him this morning!

Progress report

2010-03-10T15:39:00.001-08:00

I spent last night at the hospital with Magnus, and while it was a better night than the one before, it is definitely taking a toll on both Iggy and myself to see our little guy so unhappy. I don't know if it's because he is in chronic low-level pain, or just because he's freaked out from everything he's been through, but every time he has his diaper changed or his temperature taken (axillary, not rectal!), he SCREAMS. And then his sats go down and the monitor beeps, and it's just a very stressful situation.

So anyway, I spoke to the nurse practitioner again this afternoon and we went over what he still has to do to get out of here. For one thing, he has to get off of oxygen. He's actually had his oxygen turned off for the last hour or so, and the cannula is still in his nose, which actually makes it a little harder to breathe than not having the cannula at all, and he's been doing fine. The one exception to this is the aforementioned screaming whenever anything is done to him, but he is usually able to recover his sats pretty quickly. I don't think getting off oxygen will be a problem.

The next thing he has to do is to transition from IV to oral diuretics. That's going to happen tomorrow, and again, I am pretty optimistic.

The third thing is the one I am most worried about, which is that he has to show that his infection issues are under control. They're still not sure about the source of his infection, his temperature has been normal, and his white blood cell count was down from yesterday...but still elevated. Basically, they're going to test him again tomorrow, and his white blood cell count has to be normal in order for him to go home. This is the one that makes me the most nervous, because his WBCs were still elevated this morning despite having had 24 hours of IV antibiotics. Tomorrow he will have another 24 hours' worth on board, and hopefully that will do the trick, but who knows.

The upshot is, I think that if his WBCs look good tomorrow morning, we should be able to go home Friday. And I really, really, really hope we can go home Friday.

In happy news, Magnus's grandpa Eddie and grandma Debbie arrived in town this afternoon, and got to meet Magnus for the first time! I wish he were a little more himself right now but hopefully, they'll get to experience Magnus in all his glory before they go home next week!

Up and down

2010-03-09T18:20:00.000-08:00

Magnus has continued to have a much better day. His temperature, which they check every couple of hours, has been normal, which indicates that the infection issue seems to be under control.

His sats were really good this morning, so his nurse turned his oxygen down by half a liter. He seemed to do fine for several hours, but then this afternoon, he started to get fussy and his sats went down again. We tried several things to remedy the situation, including suctioning a bunch of gunk out of his nasal passages and thumping on his back to loosen the mucus in his lungs, but this actually seemed to make the situation worse, so we had to turn his oxygen back up to where it was this morning. But then around 5 p.m., he finally calmed down and fell asleep, and since then his sats have been great...so good that they turned the oxygen back down again, and as of this moment he's still doing really well. But my optimism is somewhat guarded given the events of today. I discussed things with the nurse practitioner and she talked about the possibility of sending him home on oxygen, which I'm really, really, really hoping doesn't happen, and I don't think it will.

One other good thing about today is that we have had some great nurses helping us out. Hoi, his heroic nurse from last night, is back with us tonight, and greatly relieved to see that he seems poised to have a much better night.

One other funny thing...when I came to the hospital this morning, Iggy told me that the mom of the patient in one of the adjoining bays told him that she had read this blog and had sent me an e-mail a while back. And then it all clicked into place...we were right next door to the Truhes. I had actually spoken briefly to Jackie last night when she kindly gave us one of their chairs, and it occurred to me at the time that she looked kind of familiar (because I'd seen her photo on her blog) but somehow my brain didn't put it all together at the time. Anyway, I know that Magnus made her night pretty miserable last night with his screaming, but she was very polite about it! They got discharged today, but have to come back in a few weeks so that Grace can get her pacemaker fixed.

Exit strategy, take two

2010-03-09T11:18:00.000-08:00

I got to speak to the nurse practitioner this morning, and we're definitely not going home tomorrow.

In addition to his sat problem, his last bloodwork came back this morning showing a slightly elevated white blood cell count, and he's developed a very low-grade fever (37.6 degrees celsius, or about 100 degrees F), so they're worried about infection. They're starting him on a course of antibiotics, but they're not sure what's infected. One of his chest tube wounds was very red and angry looking, but the nurse practitioner didn't think that would cause the elevated WBC. In order to figure out what kind of antibiotic to use, they wanted to rule out a urinary tract infection, which meant another unpleasant test: they had to stick a catheter into his penis to get a clean urine sample to culture.

Anyway, they're going to start the antibiotics soon, and recheck his bloodwork tomorrow. In the meantime, he's going to continue to get IV diuretics all day today, and then hopefully transition back to all oral ones tomorrow. And he also has to get weaned off his oxygen...his sats are still looking good, but despite my friendly encouragement, nobody has made a move yet to wean him off it.

So, with all that still has to be done, the nurse practitioner told me that MAYBE we could go home Thursday, but more likely Friday.

Low sats

2010-03-09T06:57:00.000-08:00

Magnus had a pretty rough night, as did Iggy, who stayed over with him in the hospital. I mentioned that Magnus was having a fussy day yesterday, and it only got worse...basically, he woke up crying at 5 a.m. and only slept for about 20 minutes between then and the time I went home around 9 p.m.

I had also been noticing that his oxygen saturations (or "sats") were pretty low. I had mentioned it to one of the nurses earlier, but she thought it was just because he was fussing so much. But then last night, they started to get concerned about it.

I wasn't here overnight, but according to Iggy, Magnus continued to be fussy, and his sats were really low, even with his oxygen cannula turned up all the way. And as if he wasn't fussy enough already, he had to have blood drawn several times and have a new IV put in (this one is in his scalp, yuck).

Anyway, I could go into great detail about the trials and tribulations of the last 24 hours, but the upshot is that they have increased his diuretics to get rid of some of the fluid around his lungs, and it seems to be working. Keep your fingers crossed that it continues to work. I think the increased fluid might also have been part of the reason why he's been so uncomfortable. After the Glenn surgery, babies tend to get headaches because after this surgery, blood from the upper part of the body flows back to the heart passively by gravity, and while the body is adjusting to this change, the fluid buildup in the head can cause significant pain. So it makes sense that if he had high fluid volume, that could exacerbate the pain. Of course, I just mentioned this to the nurse and she said she thought he was just fussy because he felt like he couldn't breathe because of the fluid around his lungs. At any rate, his sats are good now, and he is much more restful.

I have a feeling this is going to push back Magnus's discharge by at least a day, but I'm going to do what I can to talk them into letting him go tomorrow. He's still got his oxygen cannula turned up high, so he needs to be weaned off that, and they need to make sure he's doing OK with oral diuretics (he got both oral and IV diuretics last night).

Update

2010-03-08T16:51:00.000-08:00

Good news: Magnus got moved to the step-down unit, and he's on all oral meds now (as opposed to IV meds).

Bad news: The nurse practitioner said he's definitely not getting out tomorrow because he still has to be weaned off his oxygen cannula. Not sure when they're going to try to do that. Today has been sort of rough...I don't know if it's because he's in pain or just because he's sick of the hospital but Magnus has been extremely fussy since last night and hasn't slept much. I feel pretty certain that he'll do better at home, so I'm really anxious to get out of here.

Also, I got a jury duty summons.

Exit strategy

2010-03-07T12:32:00.001-08:00

Just got a chance to talk to one of the docs, and it looks like Magnus is on track to go home Tuesday or Wednesday! Basically he just needs to continue to do OK and to show them that he can eat well. He said the only two things that might slow him down at this point were a fever or collecting fluid around the lungs, and he said that both of these are unlikely.

Tubes are out!

2010-03-07T11:14:00.001-08:00

They pulled his intracardiac line about 2 hours ago, and his chest tubes and pacer wires just now. He was pretty unhappy during the procedure, but should be a lot more comfortable now (he's asleep at the moment...they gave him a morphine dose right before they pulled the tubes).

So now he's just got an oxygen cannula, 1 IV, and his heart rate and oxygen monitors. Next time I get to talk to the docs I'm going to try to find out what else he still has to do to get out of here.

The plan

2010-03-06T08:53:00.001-08:00

At morning rounds today, the doctors confirmed that Magnus is on schedule to get his cardiac line, his pacer wires, and his chest tubes removed tomorrow! I asked the nurse if this meant that he would be eligible to move from the ICU to the step-down unit, and she said that since he's so stable, he's actually eligible to move there now, except that there's no space over there. That's fine with us, since the ICU is a lot nicer than the step-down unit. Here he's got a big private room with a beautiful view of the park, the Golden Gate Bridge, and the Marin Headlands. Over there, he'd be sharing a bay with two other kiddos and none of the rooms have such nice views (if your bay even has a window at all).

I think I forgot to mention that Magnus had an NG tube placed yesterday...the original plan was to just feed him by bottle after he came off the vent, but because his lungs were kind of congested, they decided to start him with tube feeding instead just so they didn't have to worry about his breathing, I guess. But today we're going to bottle feed him, so hopefully, the NG tube will go soon, too.

Destroyer of lines

2010-03-06T06:07:00.001-08:00

We learned from Magnus's last stint in the hospital that he is a great destroyer of lines. This has not changed. When he went in for his surgery, they sedated him with gas and then placed two IVs (on in his hand and one in his foot) and an arterial line. The arterial line died later that same day, and they had to place a new one in his foot. On Thursday, they said that his foot IV was going bad, so I suggested that they try to put in a new one while he was still heavily sedated. They tried but the vein wasn't good. Then last night, even though he was swaddled, he managed to pull out the IV in his hand, and now they're saying the one in his foot is totally shot. He's due for a 6 a.m. dose of Lasix, so I guess he's going to have to get a new IV really soon. Poor guy.

Other than that, things are going slowly, but fine. His urine catheter was removed yesterday, and he's not puffy at all anymore. One of the nurses told me yesterday that the soonest his chest tubes can come out would be tomorrow (Sunday) because they need to be in while he has an intracardiac line, and that line can't come out until 4 days post-op? Except other people have said different things, so who knows. I haven't gotten to talk to any of his doctors since yesterday morning, which in a way is a good sign, because the less attention you get from doctors, the better you're doing!

I spent last night in the hospital and actually did manage to get some sleep. Magnus did wake up and fuss a few times, but when he did they'd give him some morphine and he'd drift back off to sleep in a few minutes.

So anyway, I'm really not looking forward to him getting this IV, and I really hope this one will last a few days! Oh yeah, his arterial line is almost shot, too, but they decided they're just going to use it as long as they can, but they're not going to replace it when it goes.

UPDATE: The nurse tried flushing the foot IV and it still worked OK, so looks like he's gotten a reprieve for now! But she says she doesn't think it'll make it through the day.

Extubated!

2010-03-05T08:35:00.001-08:00

Magnus has been off the vent for about an hour now and seems to be doing fine! They reduced his sedation for the extubation, so he's been pretty fussy, and he's very hoarse from being on the vent for 2 days. Next step is chest tubes, so hopefully he'll be a little happier after that.

Still moving slowly

2010-03-05T07:00:00.000-08:00

When I got to the hospital around 6 a.m., they had started the spontaneous breathing trial and he was doing fine, but then the attending physician showed up and I guess she was mad because they had started the trial without her being here. So, even though he was doing fine, they turned the vent back on. They just turned it down again a little while ago, but it's still on, just at a lower setting. Magnus is sleeping and seems pretty comfortable, so I'm just sitting here catching up on some work and waiting, waiting, waiting...

Still on

2010-03-05T05:00:00.000-08:00

I called in to the hospital about a half hour ago, and they said that Magnus had a good night, and that the plan is still to do a spontaneous breathing trial around 6 or 6:30, and if that goes well, to extubate around 7.

6 a.m.

2010-03-04T21:23:00.001-08:00

...is the new ETA for Magnus's extubation. He's still doing fine and making progress, they just want to get a little more fluid off him before they extubate. I'm spending the night at home, and plan to be back at the hospital for 6.

Still waiting

2010-03-04T17:43:00.000-08:00

Magnus is making progress with de-puffifying. Since 7 a.m. he has lost 100ccs, or a little less than half a cup, of fluid. I'd say he probably has another 50 or so to lose before he's back to normal, though.

They've been slowly weaning him off the ventilator today, and will hopefully try to extubate him sometime tonight. His chest tubes have been looking really good today, and his nurse was saying that she thought they might be able to remove them tomorrow. Getting off the vent and getting his chest tubes out are really the two biggest steps in his recovery, so if all that is done by tomorrow, he'll be well on his way.

Today has been a little bit frustrating, just because everything feels like it's moving so slowly, but frustrating is better than scary, and today has not been very scary.

More of the same

2010-03-04T09:54:00.000-08:00

We're still waiting for Magnus to be extubated. Overnight he developed some swelling (his face is very puffy) and they're giving him diuretics right now because they want to wait for his fluid to go down before they try to extubate him again. Nobody seems particularly worried or anything, we just have to be patient and wait until he pees some of this fluid out.

Roadbump Number One

2010-03-03T20:22:00.000-08:00

I'm completely exhausted right now (got less than 4 hours sleep last night), but didn't want to go to bed without posting an update. We finally got in to see Magnus around 3 p.m., and he looked much better than after his first surgery. He wasn't swollen at all, and his chest was closed. Of course, it was still definitely hard to see him completely sedated with tubes coming out of his chest.

The original plan was to try to wean him off the ventilator today, but as Magnus started coming out from the sedation and wiggling around, his chest tubes started collecting blood. Too much blood. The nurses tried to reassure me that it wasn't that big of a deal, but suddenly, the room started to fill up with people.

There's a scene in one of the Indiana Jones movies where the ophidophobic protagonist goes into some ancient temple or something and it's protected by hundreds of poisonous snakes. "Why'd it have to be snakes?" he says. And today I wondered, "why'd it have to be bleeding?" You may remember back in January, I posted about our fellow HLHS comrade Gabe, who passed away after developing bleeding problems following his stage 2 hybrid surgery. So even though everyone was trying to be reassuring, Gabe's story was looming large in my mind.

So, there were a few hours of excitement with trying to get the bleeding under control, which they eventually did, but because of that excitement, they decided to keep him sedated and paralyzed overnight to make sure he's fine and then take him off the ventilator tomorrow. It's not a huge setback, but it's not exactly where we wanted to be right now, either.

Our original plan had been for one or the other of us to stay with Magnus all the time throughout this hospital stay, but because he's going to be completely sedated, they encouraged us to just go home and get some sleep, and that's what we are doing.

They're done!

2010-03-03T13:57:00.000-08:00

We just got the call: they're done and everything went well! They were able to do it without putting him on the bypass machine, too (more on that later). Gotta run...

Good omens

2010-03-03T10:00:00.000-08:00

At around 8:20 a.m., the anesthesiologist carried Magnus off for his surgery. Just like before, we won't hear anything from them until they're done, which will probably be sometime around 1 p.m. or later.

Iggy is a very superstitious person, and I am not superstitious at all. I am a scientist! Except in something like this, where you have something so important happening and really no control over it, I think it's impossible not to be superstitious. And so far, everything seems to be going very smoothly.

Fasting Magnus was much easier than it was for the cath. Our instructions were that we could give him breastmilk until 3:30 a.m. and Pedialyte until 5:30. He had a big meal around 3 a.m., and then woke briefly at 4:30 and 5:30 to drink Pedialyte (the first non-breastmilk thing he's ever had to drink...he didn't seem to love it, but didn't seem to hate it, either). He mostly stayed asleep throughout the drive and the wait, and only really started waking up and seriously fussing around 8.

Iggy and I were both very happy that we have the same anesthesiologist we had last time. We really love her, and after Magnus's first surgery she would come by and check on him just about every day when he was in the hospital, which was for more than 3 weeks after his surgery. She's also from Massachusetts, like we are, and her strong accent reminds us of home! We also happened to bump into the surgeon, Dr. Azakie, when he was walking in the main hospital entrance.

After Magnus went in for his surgery, we were both hungry, so we decided to go out to breakfast, and I got the idea to go to Dottie's. We both love Dottie's, but the crowds there on the weekends are insane, so the last time we'd been there was the morning after our wedding night in September 2008. So, we ate a huge and delicious breakfast, and when we got in the car to go home, "Spirit in the Sky" was playing on the radio. Iggy has always said that that song puts him in a good mood, and we both remembered that it had been playing on the radio on the day of Magnus's first surgery.

So while rationally, I realize that none of these things could possibly have any bearing on the outcome of Magnus's surgery, so far, we're feeling pretty positive.

It's on!

2010-03-02T14:46:00.000-08:00

Well, it looks like surgery tomorrow is a go!

We started the day with blood work (which was pretty horrible...it took 3 tries to get a blood sample), then a chest x-ray, then an ECG, and then we met with the nurse practitioner and anesthesiologist, and we were home by around 1:30, thankfully.

The nurse practitioner was a little concerned about his skin, but she said that she was pretty sure it wouldn't be an issue tomorrow. Nobody from the surgical team actually checked him out, so I suppose we could still have an unpleasant surprise tomorrow morning, but I doubt it.

So he'll probably get started around 8 a.m. tomorrow, and they say it will probably take 3 or 4 hours. I'll post updates here as I have them.

Appointment day

2010-03-02T05:33:00.000-08:00

Today we bring Magnus in for his all-day "pre-operative appointment." The letter they sent us said that it will include "lab work, chest x-ray, echocardiogram, meet with the nurse practitioner, anesthesiologist and surgeon." It doesn't seem like that stuff should really take all day, but I can believe that it will!

Our biggest fear today is that they will find some reason why they don't want to go ahead with the surgery on Wednesday. Funnily enough, my biggest worry has actually been his skin. In addition to the cradle cap (which is much better, but something we still have to be vigilant about), Magnus has very sensitive skin, and is prone to rashes and acne flare-ups...including on his chest. I don't think I wrote about this before, but when we brought him in for his cath, one of the residents got worried because he had a bit of a rash in the area of his groin where the catheter is inserted. She thought it might be a fungal diaper rash, so we had to wait for the cath doctor to come by and check it out...did I mention that this was after Magnus had already been fasted for nearly 8 hours, screaming all the while? Thankfully, the cath doctor said that it wasn't a fungal diaper rash and it wasn't a problem for the procedure.

Anyway, Magnus's skin had been looking pretty good, but a few days ago, the cradle cap and rashes started flaring up again. We've been aggressively treating him with dandruff shampoo, Aveeno oatmeal bath, mineral oil, and every other baby skin remedy that's been suggested to us. And he looks OK this morning, but that could change in a few hours!

So, our hopes for today are that he gets a clean bill of health for the surgery, and of course, that the blood draw and other tests aren't too painful and go quickly. Wish us luck!

Back to work and anticipating the Glenn...

2010-02-25T13:31:00.000-08:00

I'm almost through my first week of work, and much to my relief, our childcare arrangements seem to be working out just fine. As you may recall, Iggy is staying home with Magnus on Mondays and Fridays, and the other 3 days he does a nanny share with another baby. I was particularly nervous about the nanny share...his nanny is wonderful and had babysat for us several times already, but I was nervous that with her taking care of two babies, she might not have time to push him to eat enough. Fortunately, it seems that these fears were completely unfounded! When I picked him up on Tuesday, the nanny and both babies were smiling, and Magnus had eaten extremely well, and posted a nice weight gain later that evening.

So, now the only thing to worry about is Magnus's second surgery next week.

While we are dreading the surgery, we are also looking forward to getting it over with. Once Magnus has his Glenn, he will be past another big, scary hurdle. Magnus's first surgery, the Norwood, has about 85% survival nationally, meaning that about 85% of the kids who have the surgery recover from it and go home from the hospital (and even getting to the Norwood is really the first hurdle...plenty of babies don't even get to have the surgery because they are too small or too sick). And then, between the Norwood and the Glenn surgeries, there is something called "interstage mortality": about 15% of those who survive the Norwood don't make it to the Glenn. But the Glenn surgery has relatively low mortality, less than 5% nationally and even lower than that at UCSF. The third surgery, the Fontan, also has less than 5% mortality. Basically, the Glenn is the point where the survival curve stops plunging and starts to flatten out. Of course he still faces an uncertain future, but the danger won't be looming quite so close. Another benefit to the surgery is that Magnus should be much more stable afterwards, which means he shouldn't have to take as many medications and shouldn't have as much difficulty with growth and weight gain.

While we're looking forward to getting the Glenn over with, we're definitely not looking forward to the process. Just having to watch him get an IV for his heart cath a couple weeks ago was bad enough...it's going to be really hard to see our baby with all those lines and tubes and wires coming out of his body again. But if all goes according to plan, his recovery should go a lot faster this time--they said he should be in the hospital for about a week.

So, we're really hoping that the surgery goes ahead as scheduled next Wednesday. If Magnus shows any signs of illness or if an emergency case comes up, the surgery will be rescheduled. Keep your fingers crossed...

3 months

2010-02-19T20:13:00.000-08:00

Magnus is 3 months old today! And it's hard to believe, but according to the calendar, this was my last day of maternity leave. As of Monday, I'm back at work full-time.

The week after that, he's scheduled to have his Glenn on March 3rd. Yes, the timing of the surgery and my return to work makes no sense, but I planned to come back to work next week when we were thinking his Glenn was going to happen in April or May, and our nanny share starts next week, so I may as well take advantage of that and go back to work for that one week before taking time off again for his surgery.

I tried to make the most of my last week of leave, especially since we also happened to have some beautiful weather. We took Magnus out to brunch and on some long walks, and he also had his first trip to the beach (he was awake in the car all the way there, and throughout our pre-beach lunch, then fell asleep 2 blocks from the beach, only to wake up when we were 2 blocks away again).

Unfortunately, Magnus has decided that he hates riding in the car, and will scream continuously unless there is someone back there with him to keep putting his pacifier back in his mouth after he spits it out every 20 seconds or so. Actually, if he spits it out and it lands on his shoulder, I have developed the ability to reach behind me while driving, grope around until I find the pacifier and then grope around to put it in his mouth. Which is probably not the safest thing in the world, but trying to drive when you're in a car with your screaming baby is also not that safe. I'm not sure if this new-found aversion to the car is a result of the fact that his car trips usually end in doctor's appointments, but our attempts to break this association by taking him other places have not been successful. I hope he gets over it soon, though!

We are very relieved that Magnus has been doing really well with weight gain in the last couple of weeks. He did lose weight one day (which meant another doctor's appointment, ugh) but then gained it right back after we increased his Zantac dose. And in addition to getting bigger, he's getting to be more and more mature. Yesterday, he laughed for the first time, and today he held a rattle (after I put it in his hand) and put it in his mouth (which might have been an accident, but I'm counting it anyway!) He knows our voices, and he smiles when we do something funny, which is, apparently, pretty often. He's also vocalizing more and more...I have to try to make a video of him "talking" one of these days.

But the biggest excitement of the week was the birth, on Tuesday, of Magnus's new cousin Oscar, my sister's baby. He weighed 7 lbs, 8 ounces, which is good, because I've been saying for a while now that my goal is for Magnus to weigh more than Oscar! Magnus is now 8 lbs, 7 ounces, and hopefully he'll maintain that lead! We're very excited for these two little guys to meet, but that probably won't happen until this summer, since Oscar lives in Massachusetts.

And we're home!

2010-02-09T18:44:00.001-08:00

As I had hoped, the hardest part of cath day turned out to be the hours we had to fast Magnus before the procedure.

They'd told us the cath would take 3 or 4 hours, but it took less than 2 (so I guess that made up for getting started 2 hours late). The doctors said that everything went very smoothly, they didn't need to do any interventions, and that his anatomy and pressures all look good and that he's a good candidate for his Glenn surgery (which is scheduled for 3 weeks from tomorrow).

They had to observe him for 4 hours after the procedure, during which time he mostly slept, ate and fussed a little bit, and had a couple of visitors. It was pretty weird having him in the hospital again after having him at home. I was worried that he'd be really fussy about having to be in the crib because at home he doesn't get put down too much because he doesn't like it, but he was OK, maybe because he was still recovering from the anesthetic.

After his time was up, they pulled out his IV and disconnected him from the monitors, and we put his clothes back on and took him home, where he continues to eat and sleep. Let's hope the sleepiness continues through the night, and that he doesn't decide that he's well-rested at 2 a.m.!

Well, that was fast

2010-02-09T12:17:00.000-08:00

I barely finished writing that last entry when they paged me to say that they were done and that everything went fine! I don't have any details, but I'll be sure to write again sometime today with what I've learned.

Cath day

2010-02-09T11:15:00.000-08:00

We dropped Magnus off in the cath lab at 10:20 this morning, and they've told us it will take 3 or 4 hours. They gave me a pager, but they're not going to page me until they're done unless they find the need to do any interventions (unlikely) or if something goes wrong (even more unlikely). We are a little nervous, of course, but this is much easier than dropping him off for surgery.

This morning, however, was pretty miserable. As I mentioned before, Magnus was scheduled to be the first case in the cath lab, but what they failed to take into account in telling us when to come in is that they start late on Tuesday mornings because they have a weekly meeting. We're used to and pretty tolerant of "hurry up and wait" most of the time, but this time was pretty awful because they told us to stop feeding Magnus at 2 a.m. (when we could have actually waited until 4 a.m. to start his fast). He started getting pretty unhappy by 4 a.m., and by the time we got to the hospital he was screaming inconsolably.

Then they told us that he needed to have an IV placed before being sedated so he could have blood drawn so they could check his blood type in case he needed a transfusion. I pointed out to them that he had already undergone multiple blood transfusions in this hospital during his previous stay and that I also happened to know his blood type. But apparently there was no getting around it, it was "hospital policy." So anyway, between the hours of fasting and the insertion of the IV, he was very unhappy and so were we. Finally, the team from the cath lab came to collect him and gave him what they described as a mild oral sedative...which knocked him out immediately. He was clearly pretty exhausted from all those hours of screaming.

Despite all that, it was nice getting to see so many of our old friends from the unit. When we walked in, a bunch of our favorite nurses all came up and mobbed Magnus's stroller like he was a rock star. I imagine it will be nicer to visit with them this afternoon when we're not consumed by trying to comfort a ravenous baby.

Based on what they told me, I'm expecting them to finish up a little after 1:30. I'll try to post an update as soon as I can after that, but things might be a little hectic.

Normal things

2010-02-05T15:19:00.000-08:00

Wow, time has really been flying by! Magnus's first cardiac catheterization is coming up this Tuesday, and his Glenn is scheduled for just a few weeks after that. We got the call today that he is scheduled to be the "first case" in the cath lab that day, which is great because it means that if everything goes smoothly, he won't have to stay overnight in the hospital (patients have to be observed for 4 hours after the procedure).

Magnus continues to do extremely well with everything except eating and gaining weight, and even that seems to be going OK again in the last week or two. But in the moments we aren't trying to coax a bottle into his mouth, we are really just enjoying him and marveling at his progress.

Last Monday, Iggy and I took Magnus to a "Child Observation" class at a local community college that our neighbor had recommended to us. While technically it is a free, not-for-credit class, in practice it's really more of a parents' group. At the beginning of the meeting, we went around the circle and introduced ourselves and were asked to say something about "what's going on" with our babies. I always feel a little weird being around "normal" parents in these situations. I wanted to be honest about our situation, but didn't want to monopolize the discussion or make the other parents feel bad for worrying about their own relatively lesser problems. As it turned out, though, it seemed like the most stressed-out parent in the group was not either of us, but rather the woman who brought her 6-month-old twins.

It was pretty interesting to see how Magnus compared with the other babies. He was the second-youngest baby there, but was by far the smallest, even smaller than the 6-week-old girl sitting next to us (he was 10 weeks old at the time). But developmentally, he seemed to be on a par with the 3-month-olds, which was very reassuring to me given all that he's been through. He's really strong and good at holding his head up, and is really starting to get the hang of moving his body around in a purposeful way. In fact, a couple of days ago, I was doing "tummy time" with him, and he actually managed to "crawl" using just his legs to drag his head and torso forward across the blanket! I'm sure real crawling is still a long ways off, but the will is clearly there.

Anyway, while I was reassured to see that his development was on track, Iggy was reassured about something else: after we left, he said "I was relieved to see that a lot of the other babies had even weirder hair than he does." Magnus's hair, for the record, is perfectly fine...he just happens to have more of it on the left side of his head than on the right, and not much at all on the top of his head. But there you go. His development seems to be going fine, hair included!

Under pressure

2010-01-22T16:27:00.000-08:00

I mentioned in my last entry that Magnus's weight had been a bit stagnant earlier this week. Then, when we went to weigh him last night, we found that he had lost 50 grams since the last time he'd been weighed, 2 days earlier. There were a few reasons we could think of that might be responsible for this fluctuation, but his cardiologist had told us to get in touch with her if he lost weight, and so I dutifully e-mailed her last night.

She e-mailed me right back, and said that she was concerned about the weight loss, and that she wanted us to come in to the cardiology office this morning. She told us that we might have to put his feeding tube back in, and that we should come to the cardiology appointment prepared for him to be admitted to the hospital, although she said that she thought he probably wouldn't. Needless to say, we were both pretty stressed out.

We arrived at the cardiology office at 10:15 for our appointment, and sat in the waiting room for an hour. Then we finally got to see the cardiologist, who checked Magnus out, talked to us for a while, and then left the room to speak to a pediatric gastroenterologist. When he came back, he told us that he thought Magnus might have something called pyloric stenosis, and that we'd have to take him for an abdominal ultrasound to check it out. I asked what the treatment was for pyloric stenosis, and the answer was surgery. "Very minor surgery" the cardiologist said, but still daunting to us.

The earliest ultrasound appointment they could get us was at 2 p.m., and Magnus had finished the bottle we'd brought with us, so we drove home, got a new bottle, quickly ate some lunch, and then came back for the ultrasound. It was in the same facility where I'd gone for all my zillions of ultrasounds when I was pregnant, and we were actually in the same room where I'd had my 20-week ultrasound when they first detected Magnus's heart defect.

The ultrasound was pretty horrible--Magnus SCREAMED throughout the whole thing. I think maybe the technician was pressing down too hard with the probe, because after she was done, the radiologist came in and scanned him again, and he was fine for her.

Anyway, thankfully, the results of the scan were negative! The consensus is that he just had a couple of bad days and that we just need to keep plugging away at the feeding.

We'd left the house for his first appointment this morning at 9:45 a.m., and by the time we got home it was nearly 4. And all this because he lost less than 2 ounces. It really drove home the fact that there's a lot of pressure on us in taking care of this little guy. A minor weight loss resulted in hours of medical appointments, a thoroughly unpleasant test, and the threat of a hospital stay. But thankfully, it all turned out OK.

Two months

2010-01-19T15:03:00.000-08:00

Magnus is 2 months old today. I was hoping he'd hit 8 pounds to celebrate, but he's been a bit pukey the last couple of days and he's just going to miss it.

We had a cardiology appointment today, and it went really well. His blood oxygen levels were 94% (really good for someone with his surgery) and he had an echocardiogram, too. His cardiologist was very happy with the echo--she told us that he'd had a mild tricuspid valve leak right after his surgery (which nobody ever told us about, but apparently it's very common and no big deal) and now the leak is gone.

The cardiologist also asked us if anyone from Dr. Azakie's office had called to schedule Magnus's next surgery yet. We said no, so she called over there and apparently his next surgery had been scheduled, but nobody had bothered to tell us. So as of now, his Glenn is scheduled for March 3rd.

That's a lot sooner than I thought it was going to be. Everyone had always said it would be "around 6 months," so I was thinking May sometime. I guess the main reason why they're scheduling it so much earlier is to allow flexibility in scheduling. I have heard of many families who've had their Glenn surgeries rescheduled at the last minute because it's not an emergency surgery, and UCSF only has the one senior pediatric heart surgeon. I suppose it's also good to get the Glenn over with on the early side because kids are much more stable post-Glenn...although given how well he is doing now, I feel a bit like I did before his first surgery, when it was hard to accept that he needed the surgery at all.

So, even though it was a really good appointment, Iggy and I both came home feeling pretty unsettled.

In more mundane news, we both need to start thinking about going back to work soon. So, sometime next month we're planning for Magnus to start a nanny share. 3 days a week, a nanny will be taking care of him and a baby girl who is 3 weeks older than him. The other family lives a 10-minute walk from our house, and the nanny is a very nice woman from Honduras with lots of experience. She's going to babysit for us on Thursday as a test run, but I have a good feeling about the arrangement.