We started the transplant evaluation process today and we should have all of the appointments wrapped up by Wednesday. The plan as of now is for Colman’s case to be presented to the medical review board this Friday, January 8th. They have three options. They can say “yes” or “no” or they can table it if they feel like they need more information. We’re hoping for a yes on Friday, that they believe Colman will be a good candidate for transplant. Once we have approval from the medical review board, it usually takes three to five days to get insurance approval. At that point, Colman can be put on the list for a heart transplant.
We’ve had some long days full of heart and liver MRIs, a heart cath, ultrasounds of his liver, heart and kidneys and tons of blood tests. Tomorrow, he has to go down to interventional radiology to get a PICC line placed, which will be a more stable access for his IV milrinone. Then we have several appointments for his transplant evaluation.
The goal is to get him to a point where he is stable enough to leave the hospital to await transplant and not have to wait in the hospital. The IV milrinone complicates things. I need to feel he’s safe to leave, and his team needs to feel he’s safe to leave. I asked if I could take a CPR refresher today, so if he is able to leave the hospital, I’m prepared. He tires very easily and his color is quick to change to a deep, dusky blue. We’re keeping socks on his feet most of the time because they’re a dark elephant-gray color. It makes me feel a little breathless that he’s this sick.
All in all, his spirits are good and he has a pretty philosophical outlook about this whole hospital stay. I’m really proud of how he’s handling things. I mean, it’s a lot for me to take in and process. I can’t imagine being 16 years old and having all of this thrown at you. I’d be lying if I said I wasn’t completely overwhelmed at times by the magnitude of the situation we find ourselves in and the total information overload. It’s a lot.
Thanks to everyone who’s checking on us here in Houston and everyone checking on Kevin in San Antonio. We really appreciate it, and we’re so thankful we have such an amazing support network of family and friends.