Still miraculous

It’s much easier to come up with something to say on a more regular basis if things are a) exciting or b) outraging. In the hospital it was not problem having the time to write because I was, well, unemployed for one, and usually would get some need to not sit in the beeping room for the entirety of the visit. Now, though, I do actually work and the day-to-day routine is so … mundane, for lack of a better word, that it’s hard to come up with the time to write.

However, Woody is doing great still. In fact, the moniker of “miracle baby” that I attached to him several months ago appears to be holding. Consider that compared to other kids of his ‘gestational age’ (~2 months old, if you’re counting), he is at the 80th percentile for height/length, 70th percentile for weight, and 50th percentile for head circumference. To repeat, that’s based on other kids of his gestational age, not compared to other premature kids. He’s big, his lungs sound good, and he’s still shedding medications. The pull of the diuretics appears to be holding; he gained good weight but it wasn’t water weight, and his lungs sound “clear as a bell” according to the home health care nurse. He’s no longer on a monitor, and we’re only giving him three medications at this point, although we’re likely to be giving those to him for a while.

On the other hand, we’ve still got a little outrage to complain about. For one, while Woody has gotten a bit better about sleeping*, he still manages to deprive us of a lot of REM per night. Further, we still have to deal with a lot of doctors and other health-related people, which can be very frustrating. Two examples:

1. Maggie took the kid for an oxygen evaluation yesterday, and had a pretty lousy time at it. The people running the evaluation didn’t really tell her what was going on, treated her as if she was stupid, and then ran the test in ways that made it clear that their instructions didn’t match the way we’ve seen any nurses or doctors deal with oxygen before. In the hospital, especially as we were getting ready to leave, de-sats were treated with a little skepticism, as the usual reason that Woody would have his O₂ saturations go down was that he was straining (due to his hernias, of course). That being said, the nurses didn’t just jump to increase his oxygen, they waited to see if he could bring up his sats by himself, which he pretty much always did. Also, we have been warned that you can’t just have a cannula in his nose with no flow, because that acts as a flow inhibitor, because it plugs him up with no air of any kind coming through.

So how do they deal with Woody yesterday? That’s right, they keep the cannula in his nose and start him with no oxygen. Which of course meant that he desatted pretty quick, so they rushed in to up his flow. Which was fine for awhile, but he was pretty constipated yesterday, so he started grunting and turning red, so he desatted, and the people rushed in to up his flow again, and then he’s back up to the flow he was on when he started. The worst part was that the people administering the test wouldn’t tell Maggie anything, including letting her see the sat monitors—Mag knew that he was supposed to stay above 90%, but she couldn’t see what he was ever actually at.

At the end of this test, Maggie didn’t know if he was going to be off the oxygen, didn’t know if they would actually be able to tell anything about him, because they didn’t watch to see his self-correcting mechanisms, and basically had no information about what was going on at all. Hello, people? Aren’t we exempted from being treated as objects after a 141 day stay in the hospital?

I have half a mind to pull his oxygen anyway whether or not they tell us that’s ok, just because I’m pretty sure he’s doing ok. But I can’t do this with confidence because of course they didn’t send us home with an oximeter, where we could tell how his sats were; they sent us home with a stupid monitor that tells us nothing, but does beep at us if a lead comes loose, and only tells us if he’s breathing (he is). Oh, and that we didn’t need. Grrr.

2. Preemies are expensive, right? We know this, everyone knows this. We were told by the hospital that a certain class of our expenses would be paid by the state, because Woody was automatically considered disabled by Social Security (see 20 CFR 416.926m(7)). Well, we just heard about this, and were told that our claim was denied unless we could show that Woody had received at least one dollar in aid for every month that he was in the hospital. Of course we couldn’t show this, because Woody didn’t even get his SS claim approved until mid-August, so we don’t qualify.

I’m pretty sure that based on this interpretation of the rule, no preemie could ever qualify, which makes for a pretty stupid interpretation of the law. But now we have to go through some appeals to get someone to acknowledge some degree of reality. And yes, this is really pissing into the wind for costs, considering that he’s probably over $2 million in expenses paid at this point, but we are talking about money that’s out of our pocket, which is pretty tough considering that I was unemployed until recently etc. So grrr to bureaucracy, too.

But after all the complaining, I’m still very thankful that Woody’s doing so well, and am glad that we have a nice network of people that like him so much.

*I have had a working theory since college that REM cycles work in around 4-hour increments, which is why any sleep less than that seems almost worthless. Woody’s getting better about giving me at least this much; I think we’re up to about 2 out of 3 nights where this is true. I’m still waiting for the magic six hours, though, which just seems heavenly.