Ahead of schedule

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

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

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

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

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

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!

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.