Normal life

Yes, it has been a very long time since I posted here! Life has been busy, but medically uneventful, for the most part. Nobody has been in the hospital this year except for the 2 days in January when Magnus was in for his cath, which is quite a departure from what we've been through in the last few years! Magnus is doing great, and this month started going to pre-K 3 half-days a week. Magnus is very social, so we'd wanted to do something like this for a while, but his eating issues and feeding tube have been the primary obstacle in the past. He doesn't need to use his feeding tube all the time, but we knew that many places were not going to want to deal with having a g-tuber and having to be prepared for if the tube were to come out. Luckily, we found a place just a few blocks from home that was not daunted by the feeding tube, and since the school day is only 3 hours, we wouldn't have to worry that much about whether he was eating at school. And now we are actually experimenting with 1 month of not using the feeding tube. So far we're about 2 weeks in and he doesn't seem to have lost much, if any, weight! The GI docs say he has to go without using it for 6 months before we actually take the tube out. One thing I'm NOT looking forward to, though, is having to transition him back to taking all his medications orally. We sometimes have had some success squirting a little bit of some of his medicine in his mouth, but I'm sure he's not going to like taking ALL those meds orally twice a day. I have to admit that I have my own set of neuroses surrounding this topic; I used to get a lot of ear infections as a kid and would have to take foul-tasting "cherry" flavored penicillin pills. It was actually so traumatic that I would hide the pills under the couch cushions instead of taking them, even though my parents threatened me that if I didn't take them I could go deaf! Deafness seemed preferable to swallowing those pills! (Luckily, as it turned out, my parents were bluffing, and my hearing is just fine). So that's pretty much where we're at right now. I will end with some pictures of what we've been up to since January:

This was an outtake for the Valentine's cards we sent out this year. It's only from January, but he looks so much younger here!

This spring he tripped and hit his forehead on the concrete floor in our garage. He subsequently developed a huge goose egg and 2 black eyes thanks to his daily aspirin therapy!

Playing in the sand during our East Coast summer vacation. And yes, wearing that same Star Wars shirt!

Home!

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"

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

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

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

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!