WBC = 2.7 ANC = 1.9
Poor Jackie had a long difficult night with Rafi. The little one was uncomfortable and vomited several times throughout the night. They had to give Rafi ativan and fentanyl to calm her down. The end result was that Jackie didn’t get to sleep at all. Before even hearing the details from Jackie when I got here, I surmised it was a difficult night based on the fact that I had received a text from Jackie at 5:30am that started off with “FYI” and ended with “she’s now sleeping on my chest”.
Adorned in her pink hat, pink crocs, blue hospital outfit and mask, Rafi climbed into her pink convertible beetle and we headed into the tunnels today. We got to leave unit 5D for the first time in the mid afternoon and cruised the hospital. When we finally got back to the room, Rafi said “that was fun”. So we promised her we would do it again tomorrow. I think I am going to run home tomorrow and bring back my computer speakers and affix them to the back of the pink car, hook them up to an ipod and blast some theme music. Jackie thinks Rafi would like Bob Marley but I think playing “The Joker” from Steve Miller would be hilarious. Rafi is most definitely a midnight talker.
A lot of people have asked now that the transplant is done, is she now considered cured. I wish we could say that. Let’s assume, in a best case scenario, that her new cells are producing normal levels of collagen VII. The theory goes that new cells migrate to areas of the body that need them most. So basically the body triages itself and sends the new cells to those areas first. Being that her body is just ramping up in the development of new cells, and other areas are still getting affected, there is a long list of places the new cells have to attend to and of course the body is shorthanded for the time being. So it will take time to attend to current wounds, ones that will occur, and to produce enough cells to do their everyday work of fighting infections and general bacteria and viruses that are ever present. The body needs time to produce enough cells to tackle that long laundry list and then create enough in excess to start loading collagen VII up that will eventually lead to the formation of the anchoring fibrils that she has lacked all her life. This is going to take time to work completely. Probably two to three years if everything goes according to a best case scenario. So far it has.
By the way, it was the film Lucas that I referenced in an earlier update. Just trying to keep you all on your toes. Jaime S was the first to get it. Congratulations, I would say you’ve dated yourself, but you are too young to know the damn movie. It must be the board games.
Until tomorrow…..