Always a little drama in our household, so why would today be any different. As I told everyone in an earlier update, we started to track WBC (white blood counts) at day +7. We weren’t expecting anything on that day and not really expecting anything for a few more days. The first real milestone is to have a reading of .5. At that level we can leave the room and wander the hallways, as long as there is no fever. On days +7 and +8 our WBC was <.1. Today there was no < sign. That’s my first milestone. It really doesn’t mean anything yet, but hell, it made me smile. I guess it could mean that the cells are starting to grow. It may not mean that, but I choose to believe they are.

Things started off great. Except for the fact that her Gtube fell out again. For the second time, it just plain fell out. Not sure why the balloon deflated less than 10 days after it was reinserted and inflated. But it did. We decided the mickey button was defective and got a new one. We had to move quickly before the hole in her stomach started to close up. We had about half and hour. About ten minutes later we had the new gtube and one of our nurses attempted to put it back in. There doesn’t seem to be much science to it. Find hole, grease up the balloon and push. Lindsay has had a lot of experience with this and she is a good nurse so we said, sure, go for it. After a couple of attempts, I told Lindsay there was no way Jackie and I wanted Rafi to go into surgery so put some elbow grease into it. We wanted to avoid surgery for the obvious reasons but also because she has mucusitis and intubating her could really cause some damage, some more inflammation and I didn’t want any bacteria to have an opportunity to get down there. In the end, Lindsay was successful.

Of course, we were going to do a bath and bandage change right at that time so we had to postpone it. We could have moved forward, but Rafi had already undergone one traumatic experience. So we waited. We gave her Versed (the great drug she got before surgery – the one with the street name “the amazin”) and once again the sedative/anti-anxiety drug did not work. It was an exercise in futility. But we really had to wash those legs and feet. So we waited until she fell asleep. Then we waited until she was very asleep. Then we procrastinated. Finally we gave one foot a try. She was asleep until the bleach/soapy water hit her foot. She just whined and was clearly uncomfortable. We got through it. Then waited after we finished the first calf and foot for her to fall back to sleep to repeat the process. We finally did it without causing damage or tears.

Rafi continues to do well overall from an internal organ/general health perspective. Her skin is really taking a beating though. She now gets pretty big blood blisters that don’t want to drain no matter how many holes I put in them with an 18 gauge needle. That is not a thin needle mind you. I had to use a scalpel on a blister on the back of her neck. We had to explain to the fellow who was trying to talk me out of using it, what we do in EB. That blister came out of nowhere and grew so quickly and if I didn’t do anything it would have taken over the entire back of her neck. I had punctured it in several places with a large needle and the damn thing would not drain. This is counterintuitive to me. With Rafi’s low platelet count, I thought that a blood blister would have to drain easily given the numerical impossibility Guess not.

Let’s hope her WBC continues to climb. Please send some really strong positive vibes/thoughts/prayers to samantha sheridan. She is EB patient #7 and she is still have a rough go of it and a pick me up is really needed there.