Yesterday we were able to bring Rafi back to her old room on 5D. The room is easily four times larger than our ICU room, so it’s nice to have the breathing space (pun intended). It’s nice to be back. The people here on 5D were very worried about Rafi and are happy to have her back. Of course, Rafi is back to her normal self, meaning she ignores everyone unless Jackie and I leave the room. When we leave though, she is a chatty little girl. Clearly I am going to have large telephone bills when she is a teenager.
Rafi is still wearing her oxygen mask to help keep her oxygenation up. Today, we started taking it off for periods of time to see how she does on just room air. Generally she is able to keep her saturation rate to the low to mid 90s, percent wise. hen after a little time has passed, she’ll drop down to the mid 80s, percent wise and we put the mask back on. Jackie and I are both a little competitive so we are really looking for her to be 98% or above before we feel totally comfortable. As Jackie likes to say, she excels at everything and she did get a 9.9 on the APGAR so we’ve decided that Rafi is a high 90s kind of girl. I think by the end of the day tomorrow, she should be able to make it most of the day or night without the mask.
Withdrawal is an ugly experience. She doesn’t suffer it too badly but when she does we are liberal and free with the drugs. However, we use them judiciously. To give you an idea she is allowed to get both versed and dilaudid on an hourly basis. We’ll go for five hours without giving her anything. Other than the occasional shakes, she suffers from the withdrawal when she is tired. Tonight when I asked her nurse to give her the dilaudid and the versed, Rafi said, “yeah, that will make me feel better.” Pretty soon, I can hear Rafi saying to the nurse “If you don’t give it to me, I’ll get another nurse who will.”
It looks like we are going to be here in the hospital for another week or two. They want to be absolutely sure she is completely healthy before she leaves this floor again. They want Rafi to not require the oxygen mask for a few days and to be free of the antibiotics before a discharge is possible. Jackie and I have no problem with the plan and are in no hurry to push the envelope. In a couple of more days, we are going to have a follow up CT scan to see what her lungs look like at that point. She’s been afebrile now for about three days and her white blood count has decreased. All good signs.
In short, Rafi has progressed very nicely. In actuality, she has gotten better far faster than anyone expected. As we now know, people here were incredibly worried about Rafi, and they are amazed by how fast she has recovered. Earlier tonight, I let Rafi fall asleep on me as we sat in the lazy boy chair. After about two hours and our night nurse, Jackie, poking around, I felt it was time to put Rafi into her bed. Nurse Jackie asked me if I didn’t mind holding her for such long periods given what we just went through. Truth is, I don’t mind at all. In fact, I like it a lot. It’s really good to have my little girl back. For awhile there, I wasn’t sure that was going to happen. But once again, she beats expectations. What an amazing little girl.
Please keep McKenzie Gray in your thoughts and send some positive vibes her way. Kenzi is patient #9 here, and she is going to need another cord blood transplant in a couple of days. As of yet, she hasn’t started creating any white blood cells. We are hopeful that this is her complication on her journey. She is a beautiful nine year old girl who was adopted by her mother and father, Missy and Greg.
Until tomorrow………………