We are in double digits. Ten days after transplant and twenty days in the hospital. Rafi’s white blood count is still at .1. Not less than .1, so we are still smiling. On top of all the other issues, we have to deal with these large blood blisters that just won’t drain. It’s frustrating because we know they can’t be very comfortable for Rafi. In trying to drain these new blisters, I have punctured them repeatedly with a large needle (18 gauge) to no avail. I have used a scalpel on one to no avail. I even used surgical scissors to no avail. We even tried warm water compresses for more than half and hour after cutting the blister open, to no avail. Everyday is something new so hopefully in the next day or two they will resolve themselves. At least her white cell count isn’t <.1.
She is still running fevers but Tylenol with Celebrex seem to lower them after a time. The mucusitis in her mouth seems to have gotten a little better, but we know it is still in the rest of the GI tract. All of a sudden her voice will get hoarse and she’ll want either Jackie or I to pick her up, and she’ll say she’s scared. That’s when we know to call the nurse for a bump in her fentanyl. We were hoping that we had possibly turned a little corner today with regards to the mucusitis, considering she was talking more and being a little more animated. Plus, her mouth looked a little better today. We could actually see her teeth. Then, of course, she threw up some blood earlier this evening and we knew we were a little premature in our thinking. Tomorrow is another day and hopefully Rafi will feel a little better for longer periods of time. It’s a marathon, not a sprint and for every step forward there could be half a step back so we remain hopeful.
Bandage changes still are a real issue and we are trying new things all the time. We tried using Versed before the bandage change yesterday. She had it once before and I was ready to buy stock in the company that makes it after I saw how effective it was. It was hilarious. That was then and this is now. Rafi was in her Versed happy place until we tried to start the bandage change. We ended up being forced to give her some ativan to calm her down and when she fell asleep we were able to wash each foot and put on new bandages. We discussed her reactions to the bath and bandage changes in rounds this morning and Dr. Orchard thinks that the minute she feels the drugs taking effect she anticipates a procedure and goes off the farm. Sometimes we forget she is still two years old and can be difficult. Now we are going to try doing a bandage change over an entire day without the sedatives and see if that helps. Send us your positive vibes, we’ll need them.
The days in the hospital go by without any downtime. There is always something to do in the care for Rafi. Diaper changes alone have become difficult and require more pain medication bumps. We are constantly cutting bandages to replace the ones that get covered in urine or feces, or what passes as feces now a days. Rafi has a way of waiting until we are finished with a diaper change before springing the need to start all over again on us. I swear it feels like 5 hours a day are allocated to getting ready for a diaper change and then actually engaging in the change. The lasix certainly doesn’t help in that regard. Rafi was ready to be toilet trained before this started, so I can’t wait to get back to that point.
Part of the problem is that the back of her thighs are a total mess. Those wounds would be enough to cripple any one of us. She is significantly more affected by the EB wounds these days than ever before. We expected this and the doctors forewarned us as well. While we know they bother her even through the constant dose of fentanyl, I can’t help but admire her strength. One of the side effects of the pain medications is itchiness and it really hits her hard. We’ve taught her to tap herself instead of scratching herself but sometimes she just can’t help it. In general, she listens and suffers through the itchiness like a champ. To really understand what she goes through, the next time you get an itch, don’t scratch it, no matter what. Give it a try and see if you can do it.
People ask me if I find writing this cathartic at all. Sometimes it is but the most rewarding part is our morning ritual. Jackie and I have our coffee together and I read her what I wrote the night before and then we read the comments people leave and the emails people send. It’s nice. Knowing that Rafi’s journey touches so many people and reading what people write brings us together as a family. It’s a little oasis in the desert for a short time.
My cousin, Emilie, had her bat mitzvah this weekend and we wish we could have been there. Emilie and her sister, Charlie, were flower girls at our wedding. The bat mitzvah is a big step into adulthood and we are proud of her. Jackie and I want her to know that we really appreciate her taking the opportunity to light a candle and to say a prayer for Rafi. Congratulations and welcome to a larger world. We love you and we miss you.
Our nephew, Nathaniel, also took a step into a larger world recently. He broke his first bone. Welcome to the club. I think I was his age when I was in my first cast. I am sorry we missed your birthday, but we will see you soon. We love you and heed some advice from your uncle, milk the cast for all it is worth.