Tuesday, July 22, 2014


As of yesterday, Magnus is 6 weeks post-op and thus is considered to be officially recovered from his surgery. Now we can pick him up under his arms, give him a proper bath, and let him climb things and pick up heavy objects.

In many ways, he does seem healed. He had his first day back at school yesterday, followed by a 2-hour playdate. I was hoping this would leave him so exhausted that he would peacefully drop off to sleep at 7:30, but it took an hour of struggle before he fell asleep at 9 p.m., as per usual. His strength is almost back to where it was and certainly dramatically better than when he first came home from the hospital and couldn't sit down or stand up on his own. He still complains loudly about being expected to go on long walks or to go up and down stairs, but I think it's mostly psychological, and he's able to do it.

Areas we're still working on include eating and sleeping. On the plus side, it's been 2 weeks since he last puked, but he's still not showing much appetite and still prefers to get most of his calories from chocolate milk and yogurt. I guess we're moving in the right direction, but progress has been slow. Luckily, he hasn't lost too much weight and is only down about 2 or 3 pounds from pre-surgery. As for the sleeping, I think the problem is a combination of a few factors: being in the hospital for 19 days where they need to check your vitals every few hours day and night, having bad dreams, and post-surgical itchiness. At any rate, for whatever reason, Magnus has not slept through the night since coming home from the hospital more than 3 weeks ago, and typically he wakes up a few times each night and needs a parent to soothe him back to sleep, preferably Mama. I think this is slowly getting better, too, or maybe I am just getting used to being exhausted all the time.

We had a follow-up cardiology appointment and echocardiogram this morning. I was nervous about this appointment, mostly because of the fact that his appetite is still bad and that had me worried that he might be having liver problems. The echo tech was acting extra nice to us (he is always nice, but seemed extra nice today) and then THAT made me worried that he was being nice because he felt sorry that he was sending us off to the cardiologist to get bad news. But everything went OK with the cardiologist. His oxygen saturations were a little higher than last time at 84, which is not spectacular, but fine for a fenestrated Fontan. I was also worried about his weight but that wasn't terrible, either. One piece of semi-bad news was that they still don't see any signs of movement in his right diaphragm, which was paralyzed during the surgery. It may be that the nerve just needs additional time to heal, or it is also possible that it will not heal. The more time that passes without any sign of recovery, the greater the chance that it will not heal. It's not a disaster if it doesn't heal, but that would mean that his right lung would always have suboptimal function, which in turn makes things harder for his already compromised heart. Anyway, there's nothing we can do now except wait. Hey, it's not a real pediatric cardiology appointment if you don't leave feeling vaguely discomfited about something, right?

Overall, though, it really does feel like Magnus, and our lives, are getting back to normal.