This morning, a nurse came in and told me the cardiologist wanted to talk to us today, and asked if my husband could come to the hospital to be a part of the discussion as well, as they had discussed Annabelle’s cath results in their big cardiology meeting this morning.
Obviously, this freaked me out! It is one thing if they want to just talk to me, but another thing to ask me to get my husband in here too.
So Scott came in, we did doctor’s rounds, and waited. And waited. All the while I was out of my mind nervous! Then the social worker came in and said that the cardiologist had asked her to be in the meeting too.
Then I was REALLY nervous. If the news was such that I’d need a social worker (no offense to her… she’s been a HUGE help while we’ve been here) then that doesn’t sound like such a great thing.
Another half hour goes by, and I find out that they have also asked Annabelle’s heart surgeon to be there as well as our “regular” cardiologist who will see Annabelle once she is out of the hospital.
We sit down and have our meeting, and one of the things I’ve been fearing is what they wanted to talk to us about.
The consensus among the doctor’s is that we need to start the process of listing Annabelle on the heart-transplant list.
Her valve is still very leaky, even after one valve repair. Her heart function, while not bad, is NOT great, and a baby must have really good heart function in order to tolerate the Glenn and Fontan repairs. THe fear is that we will do the Glenn… and Annabelle will not do well. She would either not survive, or have to be put on the transplant list as a last resort, and many times kids don’t get a heart when there is so little time.
Listing her now instead of doing the Glenn, while she is semi-healthy, would give us more time to possibly get a heart.
The other option is to do a valve repair, again, first, and just see how she does. If she does better, then great, we try for the Glenn. If she doesn’t, then we get on the transplant list. But by then, we are at least a month or more down the road, we’ve gone through another open heart surgery with more risk, are potentially not as healthy as we are now, and are just now getting on the list.
As you can imagine, Scott and I are overwhelmed at the moment. It just isn’t something I can completely wrap my head around yet.
I don’t know a lot about transplants, but a few things I do know.
They don’t last forever. The average heart transplant must be repeated every 10 to 15 years. That means Annabelle would be looking at having a heart transplant every 10 – 15 years for the rest of her life. Granted, this doesn’t take into the fact that medical advances are sure to happen and hopefully these numbers will get better every year, but that is what they are currently.
A transplant doesn’t fix everything. It fixes her heart, yes, but it introduces a whole host of other potential problems. I don’t know all of those problems yet… we are meeting with the transplant team tomorrow to discuss.
Right now, we are in a fact-finding mode. We are getting 3 second options (I guess that would make them second, third and fourth…) from other hospitals as to what they think the best course of care for Annabelle is.
We are praying a ton, and begging God for wisdom.
And lastly, personally, I am coming to grips with the fact that … well, I guess for a long time now I’ve been in this “things will be SO much better after the Glenn” mind-set. It was my light at the end of the tunnel.
I’m having to realize that we might have to switch tunnels… and the light is even farther off now.
Anyway, your prayers tomorrow as we meet with the transplant team, and as Scott and I spend some time together and discuss and pray about Annabelle, are really appreciated.
Also, Annabelle had a not-so-stellar day today. She is still having fevers, and ran one pretty much constantly the WHOLE day. They just checked her temp a minute ago and that was the first time since midnight last night that she has NOT run a temp. I went to work for a few hours, and had to leave early because I got a call that she wasn’t doing well and was being taken back down to the PICU. But when I got here, they said they were going to check one more blood gas… and it was GOOD. So, after much discussion, she is staying here tonight, and we will reevalulate in the morning. If she has ANY little blip in the radar tonight though, we’ll just go down to the ICU as a precaution.
There are SO SO many things I have to say today… but I just need time to sort them out. Overwhelmed… that is a good way to describe how I am feeling right now.
But God knows this too. And thank GOODNESS God is not overwhelmed… and he as a TON more on his plate than me:-)
POSITIVE NEWS: Child life came by and asked if I needed anything. I told them if they had an extra mobile… that Annabelle might like it. We hang up her toys downstairs… but I thought something moving would be fun for her. Well… she LOVES it! It goes round and round and she sat there and stared at it and moved her head and eyes with it… it was hilarious! We have one at home… but I don’t think it will fit the hospital crib well, but this one fits perfectly!
Hurray for baby mobiles!