We are off tomorrow for a three-day spa vacation at the destination of our choice. Sadly, UVA called and they need us to come there instead.
Molly is being admitted so they can put her on a new medication. Actually it's an old medication that they tried to put her on in the beginning of all this mess, but her blood pressure dropped really low. They think that now she's old enough and her kidney's have matured enough that they want to give it another go! The medicine is enalipril. It is an ace inhibitor, which some of you with high blood pressure may also be on. For those of you keeping track, this will be her third daily medication and her second to help blood pressure (her first being carvedilol, a beta blocker).
Why does she need blood pressure medication, you ask? Good question. We knew you were smart. Well they have her on these medications not to help her heart get better, but to give it a bit of a break so it can get better itself (called remodeling). The blood pressure meds keep it so her heart doesn't have to work as hard and the third med keeps any excess fluid from building up around it. All of this is to try to get her cardiomyopathy (aka heart failure) to resolve itself. Which, surprisingly, does happen. BUT it also doesn't happen. So overall we're still in wait and see mode. Why did they decide to put her on these meds now?
[flashback] picturing Wayne saying "doodoodoo, doodoodoo"
Two Fridays ago we made a day trip to UVA so we could get her blood clot ultrasound. Well good news...it was GONE! So we got to discontinue those crappy crap injections. WOO. Finally I don't have to feel like someone is going to call child protection services on me when I take her out with her legs exposed for all to see the tons of needle pricks marks. So one thing off the list. Slow and steady seems to be what the universe is trying to teach me (Brian learned that one already, I'm sure).
While there, cardiology decided to do a bunch of bloodwork to check on a few things. 1) her inflammation levels to determine if they want to do another round of ivig and 2) her BNP, which is a measure of heart failure, and 3) other things I don't remember. Molly, as usual, was hoarding her blood and her screaming traumatized the nurse drawing her blood enough to come back with a present for Molly (a lovely outfit).
All the bloodwork came back fine (yay no ivig), except the BNP. Her number went from 58 to 2000. As far as I have learned, BNP is something that the body produces more of when the heart is in more failure. It is an indication, but by far not the only factor in determining how bad her situation is. Still, it was troubling so the docs decided to put her on all the meds that is protocol in these situations. Again, they won't fix anything. Just give her the chance to fix it herself. The doc also said BNP can go up and down and up and down so she's being retested in another few weeks (or maybe while we're in the hospital). I also know that Molly had a virus when the blood was drawn and I'm going to ask if that could have affected her number. Straws firmly grasped.
The good news about this trip is that I (possibly we) can stay overnight in the room with Molly. I was told there would be a cot or "chair that turned into a bed". Preventative ibuprofin here I (possibly we) come.
I'll post how it all goes on the flip side...
