Mr. Uncooperative

This is David’s new nickname, after our cardiology visit yesterday. David made it difficult or impossible for the various staff people to: take his temperature, check his blood pressure, do his echocardiogram, do his EKG, even listen to his heart with the stethoscope. It’s a pediatric practice so I suppose they’re used to this to an extent, but it was so bad they couldn’t quite get all the info they needed.

The reason we were there at all (next scheduled visit would be July) was also due to a lack of cooperation – with his supplemental nighttime oxygen, about a month ago. His pulling the cannula out was an off-and-on issue for most of the time he was on it continuously, but since we reduced it to nights only, he has not volunteered to mess with it at all for about six months. But then over a period of about two weeks, he pulled it out more and more frequently. And then one night, we reached our breaking point – David was crying non-stop and every second that Matt wasn’t holding his hands, he was pulling the tube out. Finally I declared we were done for the night, forget the O2 and we’ll call the doctor in the morning.


Dr. Pulver had told us this would happen at some point – that the effort to keep the tube in would outweigh the benefit David’s getting from it, and then we’d quit. So when we called he said it was okay to leave him off, but he wanted to see us back sooner than July. As Matt pointed out, maybe David’s full-out stubbornness yesterday demonstrated to the doctor the futility of trying to maintain the O2 right now. Though the doc couldn’t get the number he wanted, the secondary signs he looks at for the pulmonary hypertension were okay, so we’re staying off O2 at least until his next echo, in six months, for which he will be sedated at the hospital. Which is a pain and will likely end up being an all-day affair, but I certainly understand the reasoning.

I saw a lot of babies at the cardiology office yesterday. We were there for about 2 ½ hours (yes) which is longer than usual, but I think I saw at least six or seven pretty young babies coming and going in their infant carriers. I guess they see all degrees (of seriousness & complexity) of heart defects in the practice, and I have no idea how much trouble any one baby may or may not be in. I had an unpleasant but fortunately brief flashback to how much scarier this was for us when David was little – although I felt bad for the other parents, I was sort of relieved that our headstrong little guy is now not so little, he is in fact charming the whole waiting room with his grins and funny faces. Yes, that was nice.

On the wall right over the baby scale at the office is a nicely matted and framed photo of one of the other doctors, McGovern, holding a newborn baby. There is also a poem titled something like, “Born With Half a Heart,” and under the picture are the birth and death dates of the baby – only a week apart. So yes, it was nice to see David and the teenage boy in the waiting room, exchanging surprised looks and giggles.

There were some new posters up, for an organization called Mended Little Hearts, a support group/resource for parents. I haven’t checked out their website yet but intend to – it might be nice to reach out to some of those other parents, to maybe tell them it’s going to be okay.