Tuesday, August 31, 2010

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!


  1. We have been hooked in with neurology since just before Cora's Glenn; our pediatrician noticed some nystagmus (conjugate wandering of the eyes) and the short story is that we now travel to Boston for neurolog clinic. Cora ended up having a head ultrasound as well as a sedated brain MRI, both of which returned results normal for age, but it is exhausting. I do not want to be remiss in my responsibility to our child, but I can't help but think that someone is always looking for something else. I told our cardiologist the other day that really, all I dream about is just ONE doctor, somewhere, saying, "OK. Everything looks great. Take her home and enjoy; we don't need to see you again." Hang in there! Things sound busy but lacking drama which is always great. Hope your time away was restful (is that possible??)

  2. Hannah, I totally hear you about wanting to get the all-clear at least once! I do appreciate that Magnus's doctors are so vigilant about his care, but it does seem kind of crazy that we are often spending 8 or more hours a week at doctor's appointments when he is basically stable and doing well.