Rafi had her esophageal dilatation yesterday and it went very well. I was in the operating room the entire time with her and while we may have to have it done again in a couple of weeks you really couldn’t ask for a better outcome. She even had some Jamba Juice this afternoon and that made her happy. For the past week, Rafi has been asking for water and ice and she keeps saying “I’m hungy” (that’s the way she pronounces it), so we can’t wait to feed her starting tomorrow. We keep telling her that the hospital is out of popsicles but they will go shopping soon, and that the kitchen is closed. Finally, we explained to her what was happening and even though she is only two and a half, it seemed like she understood. Jackie and I told her that we were going to have a procedure done that would stop her from throwing up and we would be able to let her eat when it was over. She accepted it because she is always telling us, “I am scared of throwing up”.
The doctors were worried that the stricture was atypical because of how long it was. However, the interventional radiologist felt it was smaller than others thought and the doctors in Cincinnati agreed that she should undergo the procedure. As it turned out, the stricture wasn’t long and in one area her esophagus was narrowed down to 2 millimeters and they dilated it to 7 millimeters. The goal now is to get her to eat some soft foods starting tomorrow because that might help further dilate it or at least keep it from closing up again. She didn’t have any retching last night and, to me, that is an encouraging sign. I am much less worried that she will aspirate again and end up sending us back to the ICU.
It’s hard to believe that we have been in the hospital for 77 out of 80 days. That is a long time and we are very much looking forward to coming back to our Minneapolis apartment. Now I am pushing the doctors to discharge us from the hospital as fast as possible. Hopefully, we will be back in our apartment, as a family, by Wednesday the latest. Jackie’s father and sister are coming into town so it would be nice for everyone to be out our place instead of in the hospital on top of each other.
Rafi has started to blister again in some areas. We knew that this was going to happen and that they healing process is a long one, so we are discouraged at all. The fact is she still has very fragile skin. The latest bskin engraftment rates show an 11% chimerism. In other words, the results from area in which they biopsied showed that 11% of the cells in the skin were donor cells. Thirty days prior, and in a different biopsy site, there was a 14% chimerism. So we can say this is working, but it is going to take awhile adn we expected that finding. However, the new skin she is getting is softer and more “normal” looking so that keeps us going.
Her attitude is amazing and she doesn’t cease to amaze us. She now understands that we are from New York City but we are currently living in Minneapolis. It is so funny to hear her say Minneapolis. Not quite as funny as when she says oxycodone but it makes us laugh nonetheless. One of the big issues when we get home is we are going to have to wean her off her television habit. I swear it could be worse than weaning her off some of the drugs she’s gotten. When she is uncomfortable now, she tells us to “push the button and call the nurse”. At bath and bandage change time, she asks Jackie and I, “who is going to help us?” It’s really funny. Anyway, Madagascar 2 is her new favorite movie and at least we can all laugh together at Moto Moto. She still quotes Kung Fu Panda and gets very excited when we put the movie on. There are some nurses who come into the room to see her do this and they laugh. Rafi anticipates the lines and says them a good 30 seconds before they are spoken. She is definitely the person you hate in a movie theater.
Anyway, another day and another $15 to $20,000 to the insurance company. We really can’t wait to go home.
Until tomorrow……