Thursday, December 16, 2004

Well, I can't honestly say Will is doing much better today, but there is good news to report. In an attempt to rule out some reasons for his recent downturn, the doctors decided to have another echocardiogram taken of his heart. No, the PDA isn't open again. This time it is his ventricular septal defect, or VSD. That is a hole between the lower two chambers of his heart. He's had it since the beginning, but the PDA was of greater concern early on. The good news is that the echo and subsequent exam by the cardiologists found that the VSD was either so small that it wasn't causing much problem or had maybe closed up completely. That's good, because an open VSD can have a similar effect as the PDA, with blood flowing where it shouldn't and causing efficiency problems. And, unlike the PDA, fixing it isn't as simple as going in and stitching it off. This one would require open heart surgery that isn't done until the child is older. So, it's a good one to have off the table.

That tells the doctors that the problems are with Will's lungs. That's still no picnic, but at least they can focus on this one thing, and it does have an impact on his treatment. For example, they had weaned him off of the nitric oxide last week because it not only helps the lungs but can actually exacerbate the shunting of blood from one chamber to the other through a VSD. With that no longer a concern, they will reintroduce that to help Will's lungs again.

His head still looks huge and he has a lot of excess fluid, but they assure us that it is more uncomfortable than dangerous. He is getting a diuretic now that has begun to help him get rid of it, but he has a long way to go. Also, they have increased the dosage of dexamethasone he will receive, and plan to give a fourth course of it tomorrow, because the initial doses have been small and aren't having the desired effect. We asked about the safety of doing so, since they told us at the outset that they give it in small doses for shorter periods because of possible side effects. Without going into the math involved, they said that they changed the way they give that in the past year so they start out giving less now and increase it if needed. So, the amount he'll get now over four days is equal to what they used to give as a standard three-day course. So, we'd hoped that he'd be further along the road to recovery by now, but are hopeful that all of this will kick in soon.


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