More post-surgery letdown

We had another cardiology follow-up today. Matt and I are perhaps somewhat ... something ... in our relationship with this doc. One minute, he is the genius who ordered the x-ray that ended up perhaps saving David’s life. The next, he is sending us off to heart surgery with the following hopeful gem: “Well, I wish he were bigger.” I think the main issue is that he appears to be very close to our age, so he might get more scrutiny than someone our folks’ age. And my sister thinks he is cute; I told Matt that and then said I think he is not un-cute. ;)

So what did we find out today? Mainly, that kiddo’s little heart is not quite as … FIXED … as we thought it was. Before the surgery, Dr. Kirshbom said, “oh, I can fix his heart. I’m more worried about his lungs,” and after the surgery he was like, “oh, yeah, I fixed his heart. I’m more worried about his lungs” As if it were a given, that since he said he was going to fix it, he did. When we saw Dr. Pulver right after the surgery and had an echocardiogram, he informed us there is still a small VSD (ventricular septal defect, the hole in the bottom part of the septum that divides the two sides), but that it is so small he couldn’t hear anything, and he didn’t anticipate needing any further surgery for that; however, we would have to keep an eye on the AV valve for leakage. Today (now that we are 2 months out, and swelling/inflammation has subsided and enough healing has occurred so that he’s confident that we know what we’re looking at: (ahem) there is also a small ASD (atrial septal defect), there is mild leakage for the left valve and mild to moderate leakage on the right side (or maybe it was the other way around), and the pressures on the right side are higher than normal. He still doesn’t foresee any more surgery in the immediate future (which he sort of defined as, the next six months) but definitely didn’t rule it out for a few years down the road. AND he has sort of downgraded his assessment of the surgery from “good” to “acceptable,” or something like that.

(Please take a moment to digest. This was really not what we were wanting or expecting to hear. If you feel like screaming that’s okay. That’s how we felt). Keep reading...

Matt and I just talked about it upstairs (9:30 p.m., after getting both boys to bed). We are both feeling pretty discouraged, though I think we took the news pretty well in the doctor’s office (Matt said he was surprised I wasn’t more upset; I said it was likely just shock and disbelief – Dr. Pulver just kept on listing things that were wrong, and I just couldn’t really hear it all). The main issue goes back to what I vented about right after the surgery – to us, the heart surgery was this monumental happening, and everything was going to be better afterwards: he would be off the oxygen, he would have more energy, appetite and weight gain would be better. The last few things (energy/appetite/weight) have come through, but if anything his breathing is worse, he will likely be on oxygen for at least another year, and it has just not been the great “fix-it” we thought it would be. And perhaps that was unrealistic on our part, but jeez, we did not totally invent the notion that after the surgery, his heart would be … FIXED … and we wouldn’t have to worry about it anymore. And after the surgery we worked to accept the situation with the pulmonary hypertension/oxygen and the new concern of aspirating on his milk. Pulver was not thrilled to hear about the results of David’s swallow study last week, and talked again about how inter-related everything is: aspiration and reflux affect the lungs, the way he breathes aggravates his reflux, and everything with difficulty breathing can have a long-term effect on the heart.

(Photo: David's repaired heart. Even with all the stuff discussed above, we could tell right away that there are now four distinct heart chambers, whereas before everything just sort of blended together)

I am pretty proud of us for how well we have coped with this whole situation thus far. As Dr. Warren (our OB) put it shortly after David was delivered, “You guys are great. You hear bad news, and it’s difficult to hear, but then you accept it and move on and find out what you need to do next.” …. Well, yes, that’s a pretty decent summary of my approach to life. We haven’t spent a lot of time mired down in the unfairness of it all, either; the way I figure it is, David doesn’t need us to be in denial and blathering on about how unfair all of this is. It’s probably okay for us to be sad, but then he needs us get the heck on with it – talk to the doctors, get information, and above all just take care of him, day in and day out. So that’s 99% of it for me. But that other 1% is pretty overwhelming today. … I keep thinking that we will be able to deal with all of his developmental concerns with relative ease, given the difficult time we have had with all the medical stuff. And I suppose I was thinking about it like, one day the medical stuff will be over, then we will have to worry about him crawling and walking and what his IQ will be and what I will do the first time someone calls him a “retard” (answer: kick them to death) and who will take care of him if Matt and I die and if he’ll get married …. But perhaps we will get to deal with both medical issues and developmental issues together, for a long time.

(We will feel better about this tomorrow, and we will move on to figuring out what’s next. But right now it just feels yucky. And, yes, unfair.)

I can't remember when I wrote this (and am too lazy to scroll back thru CB to find the date)

A couple of random thoughts:

1. I think the parents of every baby born in the United States, with Down syndrome, all receive the same book, Babies with Down Syndrome. It is not a bad guide, to all the medical issues you could face, accessing services, and how to deal with other people about it. I had read an earlier edition while I was pregnant, but we got the most recent edition at the hospital. When I skimmed over this copy (this was when David was about 4-5 days old), I noticed something I had not in the previous book, that aside from GI/heart/developmental/vision/hearing/etc that your kid may be at risk for, Down syndrome also affects their … teeth. Yep, even their teeth come in later, they may appear in a different order from other kids’ teeth, and they may be differently shaped (the term they used was, “pointy”).

When I read that, I closed the book and threw it across the room (this was at the weird little hospitality house where we stayed for a few weeks), and have not picked it up again since. The reason for thowing it, at the time, was that I could not bear to hear one single more thing that could be wrong with this kid. And I haven’t picked it up since because I think I already know most of what’s in it, so why bother?