Right now Rafi is getting her last dose of busulfan. It’s nice to be done with the first drug. Unfortunately, she is starting to feel the effects. She has some stomach cramping, some diarrhea and she’s thrown up a couple of times. With that said, the big issue up till now and a pretty large one going forward is the bath and bandage change. The nurses on the floor have been great in making the time to help us as best they can. It’s always been a three person job and now we are trying to figure out how to make it a two person job without risking injury to Rafi.

We tried some new drugs today for the bath, chloral hydrate and dilaudid. Chloral hydrate is a sedative and a hypnotic. While it worked a little bit, I wouldn’t say it was a huge success. She was actually a litlte more agitated at times. She didn’t get a large dose and we are going to try a larger one at the next change to hopefully make her calm enough to last through the entire process. She’s been a little crazy by the time we get to her calves and feet (about an hour and a half into the whole thing). It’s difficult at best when she has no bandages on and she is flailing around. It’s stressful and we are constantly afraid of creating new wounds. I’ve taken skin off her calf before when trying to control her movement and now would be a terrible time for that to happen. Keep your fingers crossed that the increased dose of chloral hydrate and the strong pain killer, dilaudid, will help keep her calm.

In writing these updates, I try to think about what I would want to know if I was thinking about going through this process with my child. Jackie and I want to provide not only anecdotal information about Rafi, but also information that is helpful for the EB families about to go through this or those thinking about it. The information I would want is not always what others want or need. Please don’t hesitate to ask specific questions.