You know it is a hard day when I post three times!
My last post was written from my phone, thus the reason a little choppy. I was sad that we were back in the hospital, but really, was more okay with it than I sounded. In my heart, I’d felt that she needed to get the heart cath done this week. Everytime I thought about them putting it off, I just didn’t feel right. So to hear the news that it will be in the morning, while scary because they obviously were concerned something was wrong (thus the reason we bumped someone else and are first case) was a relief because I was already at peace about having it done.
And being in the hospital… well, it stunk, but so would have getting up at 5 in the morning to come to cath lab! So I’d determined to be okay with it too.
However, when they came in a few hours ago and told me that we had to go to the ICU… THAT I was most certainly NOT prepared for or okay with.
In their labs they’d taken at clinic, they took a BNP that had just gotten back later this evening.
Medical Lesson for the day
I’m sure you don’t remember, but while we were waiting on the heart transplant list, her BNP was a number we followed a few times a week. She was usually between 1000 and 1500… occassionally would jump up to 3000 but would always come back down. 3000 is VERY high, but so is 1000…
A normal BNP is less than 100… preferably less than 50. Anything over 500 is pretty definite point to congestive heart failure. (this I am taking a little from my knowledge here… and a little from Wikipedia!)
So 1000 – 3000 was very bad, but with her half of a heart and need for transplant, it was to be expected. As we followed the BNP, if it jumped and stayed high, it would point to further intervention needed.
*step off medical teaching soapbox*
Anyway, Annabelle had one of 900 last week before we started her on the steroids. I was not aware of this, otherwise I would have been much more worried, so let’s count that as a good thing! It was probably one of the things that spurred them to start the steroids in the first place.
They wanted to check it today, to see a trend.
It was 2200. Higher than it usually was even PRE-transplant. A pretty definite sign of heart failure.
My heart pretty much dropped to the floor when I heard it. Yes, there could be other explainations, but that is HIGH, and is NOT okay. SO much not okay, that they made us come immediately to the ICU and started her back on vapotherm and steroids, even though she is keeping her O2 saturations at a really good number with just a half liter of oxygen. The hope is to make it easier for her to breathe and make her heart have to work less hard while we figure all of this out.
We are still on course for a heart cath and biopsy first thing tomorrow morning. That should hopefully tell us if she is in rejection, what kind of rejection, and just give us a lot of information about her heart and how it is functioning. They will most likely have to balloon her left pulmonary artery, and will look at her RPA and SVC to make sure they don’t need ballooned as well.
Our hope, and prayer, is that everything goes well, that they get all the information they need, to be able to make wise choices about Annabelle’s care.
Heart transplants are hard. Every case is different, and there is no fool-proof way to do things, no definitive answers. Many have asked, “Okay, she’s in heart failure… what do they do?”
I can’t answer that right now, and neither can the doctors. The answers run from minor tweaks to major-major-I-can’t-think-about kinda stuff.
Let me also define heart failure, because it is confusing as well. It doesn’t mean her heart is not working. It just means it is having to work really hard to do it’s job and isn’t doing a GOOD job. Think of it like getting an F on a test. It hasn’t failed the whole grade yet, we just need to get it a good tutor and make it study harder!
How am I doing?
*sigh* I really really just want her better. I really do. I’m trying not to be frustrated. The transplant was supposed to be our turning point. We knew there were other things after that we might have to deal with, but they were supposed to be minor compared to getting the heart. And I guess they were… but… I really want to be home and doing WELL. I really really do! If this sounds whiny… well it is. I feel like stomping my foot and yelling really loud right now. Yes, a full-fledged temper tantrum sounds EXACTLY perfect.
I know I’d feel crappy afterward, though, so I won’t do that just yet.
I’m just scared. Would God really bring us this far to still take my baby away? I know, that is the worse case scenerio, but I stood over her bed and cried today, just looking at her beautiful face, and begged God not to take her. For some reason I just have a ton of fear tonight… more than I’ve had in a REALLY long time. Even during the transplant, I had this confident assurance that she was gonna be just fine. I wasn’t worried at all.
But today… today I pulled a Moses.
Bear with me here, because this is a VERY loose analogy. Remember when (or more aptly put, remember reading when…) Moses pleaded to God on the Israelite’s behalf? It is in Exodus 32. God was going to destroy them all because of their sin and disobedience to him. He even told Moses he would make HIM a great nation. But Moses told God that it would not serve God’s good purpose to destroy His people.
Moses reminded God of his promise to make the Israelites into a great nation. He reminded God that the Egyptians would think him an “evil” God for bringing the Israelites out of slavery just to smite them in the desert.
And God relented and did not destroy them.
Now, I don’t believe Annabelle (or anyone in our family!) was making idols and worshiping them, or that God is doing this to punish us. And I really really do NOT think He is going to “kill” my daughter.
But I found myself reminding God of his promises tonight. Reminding Him of all the people praying for Annabelle, of everyone believing in her healing and restoration with this new heart. Reminding him of our determination as a family to be faithful to HIM and to give Annabelle to Him on a daily basis.
I know God already knows this. I really do. But it just felt important tonight to remind Him.
Just as important though, if not more so, is to give my Annabelle completely into His hands… for the billionth time since she’s been born! She is His more than she is mine, and He loves her SO SO much more than I ever could. No matter what, I trust her into his care.
Jesus, not my will, but THY will, be done.