We’ve decided to give Ambien another chance. By that you should have surmised that it didn’t work. The little one can power through all kinds of drugs. Take for example, her blood pressure is still high, no matter how many drugs or of what concentration or dosages they are. To give you an idea, Rafi is currently on 6 blood pressure medications and her pressure is still high. It’s probable that the immunosuppressant (cyclosporine) is responsible for the hypertension. Of course, certain types anti-hypertension drugs increase the kidney’s level of sodium. This leads to hypertension. Nice little catch-22 we find ourselves in here. I am more inclined now to push the doctor to fall back on the blood pressure dugs, clear the kidneys of the sodium with diuretics and then see where we are. Because at this point, just adding drugs or increasing dosages is getting a little insane. Plus, repeating the same behavior and expecting a different result is the definition of insanity.

We discovered the source of her fevers today. Turns out Rafi has a little bacterial growth in her blood. They think it is a variation of staph and they should be able to clear it up pretty quickly once we get the sensitivity results. Those results will tell us what antibiotic will work on the infection. This is not uncommon at all and one of the other side effects of the cyclosporine is an increased risk of infection. Go figure. We also found out that she once again has some MRSA growth on some wounds. She’s tested positive for MRSA once before but we were able to beat it pretty easily. Hopefully, we can do it again with a lot of bleach, and some silver impregnated bandages along with the antibiotics she is taking. We were warned by Drs. Wagner and Tolar that these EB kids tend to have some issues right at the time of discharge. Well we didn’t break that mold.

Rafi’s numbers are still great as are her spirits. She even played with a veritable stranger this afternoon. There is a program here, called Care Partners, where people volunteer their time to play with the kids, give you a break, run errands for you, etc. This one woman came in and Rafi was engaging and talkative and played with her for a long time. We were surprised being that Rafi is very shy. To give you an idea, Lisa, one of our nurses who is with us a lot of the time, is finally being addressed as “she”. “What she doing?”

Rafi actually fell asleep on her own this evening. I can’t remember the last time that has happened. So we put in the Ambien about fifteen minutes ago (about a half an hour after she fell asleep) and we plan on giving her some longer acting pain medication (dilaudid) in about forty five minutes. I hope this cocktail will keep her asleep for a period of time. Conventional wisdom is telling me to sleep now stupid.

One last thing, for those that are going to follow on this journey. You are going to have to get ultrasounds at some point and if your child has open wounds or very sensitive skin, you may be worried about the direct contact of the wand to the skin. We were. As it turns out, using Vigilon or Cool Magic gel sheets work very well in protecting the skin and still letting the technician to get good pictures of the organs.

Off to bed if that’s possible, until tomorrow………………