August 8, Day +170

Rafi has undergone three out of four rituxan infusions. Her epstein barr viral load had gotten as high as 80,000 before the infusions. That is a tremendously high number and really signaled that if we didn’t give her the rituxan there would have been a very good chance that she would have developed lymphoma. Fortunately, her viral load is now undetectable. We have had three test results confirming that level. So for now, there is one more thing we can cross off the list to worry about.

Not so fast about the don’t worry aspect of life. Once again we have a family member as an inpatient. Jackie was admitted this afternoon to the hospital. We went to the ER this morning after Jackie had been suffering for days with an infection in her arm. We thought, and hoped, that it would resolve itself. This morning she woke up in more pain and we felt it best to get it checked out. That led to IV drugs, a couple procedures and a ticket for a night in the hospital. Hopefully, we can get her home tomorrow.

People often ask how is Rafi’s skin and do we see a difference at all. There are areas that used to always have a wound of some sort on it. Her right cheek, forehead and eyelids were problem areas before the transplant. Now they look great. She rubs her eyes and doesn’t hurt herself. Her calves used to always have worn away skin from holding them during bath and bandage changes. They don’t anymore. In fact, we are thinking of not even bandaging them anymore. We don’t bandage her wrists anymore and nothing has happened there. She is her own worst enemy though. She is constantly causing problems on her upper arms and by her stomach. Her neck is also prone to wounds. Her feet get pretty beat up as well. The worst part is, her wounds now get infected very quickly. We are in a constant battle with MRSA. Bleach baths, silver gel, and polymem are constantly employed in the fight. We hope that with time and more collagen VII production that the number of wounds decrease.

Our biggest concern right now are her feet. EB is winning the battle with her feet. It seems like they are turning inward more and I fear serious contractures are not far off in the future. I hope we can avoid the use of a wheelchair.

That’s it for now. It’s only a matter of time before Rafi starts the nightly ritual of waking up often. I am alone tonight and it could be a long one.

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