Julianna spent the entire morning screaming. Those who have ever heard her get mad at her brother know the sound I’m talking about. She did not take a break from the time I got here until after 1p.m., except for ten minutes when I think she actually slept. Just one breath after another, AAAAEEEEHH! It wasn’t as bad as it sounds, because the torture device, pardon me, the bi-pap, muffled them almost completely. (If that tells you anything about this horrible invention.) Her heart & respiratory rates were sky-high. But it was an improvement nonetheless b/c it was MAD screams, not panicked screams like yesterday. However, mad turned to panic every time we messed with her death mask, excuse me bi-pap. The usual masks wouldn’t fit her head, so they put this hard rubber thing on her, with hard rubber straps that, by this morning, had caused a lesion on her left cheek from all the thrashing, and were well on the way to putting another on her right cheek. This despite the second-skin stuff they put underneath it to try to cushion her skin.
The X rays indicate that the pneumonia is more or less off the radar now, meaning it’s not really the issue; the issue now is viral, they think–it’s affecting her heart, which is not pumping hard enough, so fluid is backing up into her lungs. This means they have to keep her air support under pressure, so that the pressure in her lungs is sufficient to force the fluid out. Hence the bi-pap–that’s what it does; it seals around the nose & mouth and forces the air in.
Anyway, all of this is simply to illustrate where we WERE, versus where we now ARE. I’ve spent little time online today b/c I’ve been caring for kids, and that’s probably a good sign. I had to push for some sort of cushion on the rubber straps, to protect her poor beautiful face, and I pushed for some sort of change in the regimen, because I was sure she wasn’t going to get better as long as she was screaming instead of resting.
Dr. Downs came in and we talked about options, and he called in Dr. Burny, who of course treated her all last week, and between the two of them they decided to take the bi-pap off again, and again, see how she did. And by now it was critical for her to have some food, b/c the feeding tube came out three days ago and she’s had nothing but a spoonful of jello since then.
That was two hours ago. She’s starting now to get agitated, but her numbers look pretty good, actually, so it’s hard to say whether she’s headed for respiratory distress again, or if she’s just pissy because she’s starting to feel just enough better that she can make everyone else miserable. 🙂 She’s been signing “all done” all afternoon. The nurse said, “Maybe she just wants to make sure we know she’s done with the mask.” I second that…especially after she yanked out her flow-pap (the nose things) and signed “all done!”
We brought in water and ice cream at the same time. Practical Mommy, caregiver, had the water and got roundly rebuffed, while she lunged for Daddy, who naturally chose to carry the ice cream. Hmph. But Mommy redeemed herself later on by bringing cheddar cheese. 🙂
Her blood pressure dropped quite a bit last hour but now is coming back up, so for now, things look good. We continue to be profoundly grateful to you all, even though I guarantee we will never get thank you notes out. Sorry!
Kathleen M. Basi 