2

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!

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

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!

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?

...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

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

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

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

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

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

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

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

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

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.