Admission

Greetings from 5D, the BMT unit at the hospital. 

Rylie's sedation for the MRI went okay today, although the intabation was again a little tricky for the anesthesiologist. He thinks it is the regular progression of Hurlers that causes the airways to narrow. He is hopeful that the narrowing will improve after transplant. We're now in the hospital ready as we can be for Rylie to start preparatory drugs tomorrow. Rylie was already pointing to the door of our room tonight, asking to leave. My heart breaks realizing how much she's going to hate being shut up for so long. They try to make it a little less hard by providing a list of kid movies and different toys. Next week we should get some visits from the physical therapist, speech therapist, and occupational therapist, so perhaps they will bring a little fun to the days. 

Rylie is sleeping now, and I pray she adjusts well to hospital life. When things are good, Rylie will have her vitals checked every 4 hours. So she'll have a couple visits at night. Please pray that she is able to sleep through the vital checks and not get too upset by the interruptions. It will certainly make the next month or so easier if she doesn't mind the visits from the nurses. 

So we're on day -13, meaning the transplant will take place in 13 days. The cord blood is in the deep freeze here at the hospital ready for the big day. For most patients, the hardest days of the process are +3 to +15. I asked a while back if we would know who the donor is, and the nurse said there is no way to locate the cord blood donor. We do know that the donor is a girl with B+ blood! Rylie is type A+ so her blood type will change to B+ after this. Since we'll never know the donor, we thank every parent who chose to give their baby's cord blood, and for those on the bone marrow donor list. We're grateful.  

Until tomorrow.