I know, I know, it’s been a few days since I have posted. Sorry. I had a couple of friends, Peter and Tore, in from out of town and we have been out and about. Jackie was nice enough to stay in the hospital for the past two nights so I could spend the time with them. It was a welcomed distraction for me and as it turns out, for Rafi as well. She has decided that Peter and Tore are not Jackie’s and my friends, but rather they are her friends. Las night when the three of us left for the evening Rafi got very upset and cried. An unusual reaction from her. This morning when I told Rafi that I was going to go and pick up our friends, Tore and Peter, she said, “No, no, no they are my friends.”

Rafi is still spiking fevers but we seem to have gotten her blood pressure under control. As it turns out, the automatic blood pressure machine isn’t quite as accurate as one would hope. Plus, we doubled her dose of one of her beta blockers and the two factors did the trick. Rafi is also very close to her admission weight now, only 100 grams off, so that’s another good sign. She is drinking fluids orally and can eat a good amount of chicken noodle soup. She continues to do extremely well through this process, even though our hospital stay has become a little longer than we thought. The doctors tell us she is not only doing very well for an EB patient going through a transplant, but also any child going through a transplant.

Her spirits have been better than we imagined they could be at this point. Nurses who haven’t seen her in a week or more say she is a completely different child. There are times that she actually engages in conversation. Jackie and I have learned that Rafi does much better with people when we leave the immediate vicinity. So we are trying to cut the cord at times.

We got word that NY Medicaid is allowing us to get a full time nurse when we leave the hospital. A nurse at home will prove to be very helpful for Jackie and I. A nursing agency I contacted awhile ago, before we even came to Minnesota, was willing to file the appropriate paperwork to get enrolled in NY Medicaid. Add to that the outstanding help of Katie at Skip of NY, who shepherded the entire process, we will be able to have the help we need when we get out. It will be nice for Rafi to have another adult presence besides Jackie and I.

We have been waiting on the results of two tests to see how the transplant is working so far. We got the results of one of the tests and it wasn’t the more important of the two. The immunoflourescent mapping did not show an increase in collagen VII at the dermal epidermal junction to date. While that sounds horrible, we want a higher level of collagen VII at the junction, Dr. Tolar explained that this finding was expected and that they don’t usually see an increase in the levels of collagen VII until at least day +60. So we now eagerly await the rflp test results which will show the percentage of engraftment.

Until tomorrow…………