I believe I noted a when we were first told about the transplant option, Scott and I asked for a few second opinions.
Those were requested for the same day, and we received an answer from 2 of the 3 the next day.
The third we didn’t receive until yesterday afternoon, and we were told about this morning.
When we decided to go ahead and list her for transplant, our initial reaction was since 2 of the 3 opinions were heart transplant, the 3rd would have to be something really really unique and different in order to make us change our minds.
Well, it was unique, and it definitely was different.
Boston Children’s came back and said there is a small possibility that they would consider trying a double-ventricle repair on Annabelle.
That is, they would try to repair her valve and actually use her too-small left ventricle. Meaning, not only would she not need a new heart, but they would try to fix her WHOLE heart, not just use half of it.
They don’t have enough information to make the firm decision, and they have asked for 2 other tests to be run on her in order to give a final “this is what we could to.”
Needless to say, Scott and I have been completely blown away by this.
Now, on one hand, the tests they run could very well (and in the opinion of our current medical team, would…) rule out the option of the repair, thus leaving us with just the heart transplant option again. And the tests, while not extremely dangerous, do require deep sedation and things similar to a heart cath.
So what is a mom and dad to do?
I have three medical teams saying, “Transplant!” and I have one medical team at the top hospital for pediatric cardiology that would give us a chance at Annabelle living a normal life… with no fear of her heart rejecting and having to have a retransplant every so many years.
But at the same time… this new option is really risky and a very aggressive step.
We have a TON of questions still, and have only just been presented with this in very, very basic terms, but please pray for us as we make some very hard, hard decisions.
The other thing we have to consider, is that this would potentially mean that Annabelle would be moved to the Boston hospital (something we are still clarifying) and wow. That would… yeah. Not sure what we would do with that either.
So yes, please pray for us specifically for divine wisdom over the next two days. We have to decide today if we are going to do the tests by end of day today, and those test would be run on Friday. Preliminarily, we’ve decided to go ahead with the tests, as more data is never a bad thing, in my opinion. But I still need to talk to a few people and ask a few questions first.
I’ll probably post more in the next few days when I know more, and when I can sort out all the fifteen-billion thoughts running through my head.
THANK YOU for your prayers in advance… we appreciate them more that we could ever express.
Spoke with a few of the cardiologists, including our transplant coordinator.
There were 2 tests they needed to do. One we can do here, one they feel would need to be done in Boston.
We’ve given them the go-ahead to do the one here (an MRI that will require sedation…) They are fairly sure that it will rule out this new option… but if we didn’t at least do the test, we would always have the “what if” in the back of our minds.
So potentially on Friday (they have to figure out how to work us into the schedule) we will be going for the MRI.
In the mean time… I’ve told them that we are still definitely okay for a heart transplant and if one should come available… we are good with proceeding with that option immediately.