Rebekah's Hemoglobin and Platelet counts were doing ok today, so she didn't need any Red Blood or Platelets today. Her White Blood Count, however, was low (as expected). She really needs to be isolated - good thing she is done with her Christmas Shopping!
The Nurse Practitioner that she saw today, suggested that we come back on Friday with the hope that her White Blood Count will be on its way back up by then and we will be able to stop the daily shots. The clinic won't be open again until Tuesday and by then we would expect her White Blood Count to be pretty high. (The last time she had this set of chemo drugs, her counts were really high by next Monday.)
When her White Blood Count gets real high, she can have bone pain and we don't really want to put her through that if we can avoid it - although it would be hard to know IF that was her problem. I've probably been told about the bone pain before, but it hasn't sunk in. We don't expect to need Red Blood or Platelets on Friday, but we never know.
Also, this week or next she will need to get her IV antibiotic. The Day Treatment center was too busy today to do it.
Her bottom continues to be very sore and raw in some areas. This can be a very high risk for infection. Not only that, but an infection caused by the bacteria in the GI Tract can be very serious. Any fever at this point means an automatic 48 hour or longer hospital stay. They would want to start antibiotics immediately and it could be life threatening. The Nurse Practitioner suggested that we soak her bottom in the tub for a little while each day. She wanted nothing
to do with that this evening. Maybe we will have better luck tomorrow.
Meanwhile, her stools are getting more firm - no more diarrhea. Let's hope that will be better for her bottom and that they don't get too firm - another potential problem.
Before her appointment today, I stopped at the pharmacy to get a refill on her "butt paste" - a special blend of anti-yeast, desitin and other products that the hospital makes. The tub that I got last Saturday was used up in 2 and a half days (too many diapers and too large an area). Anyway, I asked if there was any way to get two tubs. They said that they would need to contact the doctor to get approval for it. When I was at clinic, they had signed it and faxed it down. When I got back down to pharmacy, they were pulling it off the fax and getting it ready, so I had to wait. Then, the insurance company denied it because it was supposedly a 10 day supply. Uugh! They were going to call the insurance and see if they could get it worked out. More waiting... Finally, they got it worked out and I was able to get two tubs and another over the counter diaper rash ointment (calmoseptine) that does a good job as a barrier and is difficult to find. I figured that I needed to make sure that I had plenty of good ointment to last past the weekend.
Before clinic, we stopped in at the School Age hospital ward where Rebekah usually is. We had left a christmas ornament in the room last time and I wanted to know if they had found it. They looked around and couldn't find it. When I got home and checked the mail, it was there. Nurse Ron found it and mailed it to us. That was such a blessing. Sometimes it is the "stupid" things that can really make me upset and this was one of those things. It was good to have it back.
She was feeling pretty warm tonight before bed, so we checked her temperature. Her forehead temperature was 100.3. It runs a bit higher than an armpit temperature (which seems to be the standard), but anything over 100.5 should be a call to the doctor. Please pray that the temperature decreases so that we don't need to worry and rush to the hospital.
We are continuing with the bolus feeds, but she is objecting to them. She, for the most part, seems to be physically tolerating them, but does not want
them. She wants to use her pump. I have been explaining that she only gets the pump at night. If she is hungry then we can give her "quick" food (as in a bolus). She is definitely not thrilled with the idea. But since she seems to be tolerating it, Mommy is trying to be consistent with that. We'll see how well it continues to work.
She is also having to get used to sitting at the table with us at meal time. She will have a plate in front of her and might sample from it, but she needs to sit and be social. She did pretty well today with sitting at the table, but does get impatient (she is, afterall, 4). At the end of the meal, she gets her bolus feed. Poor little girl, lots of new rules to get used to.
We continue to hope and pray that Rebekah stays out of the hospital, that her diaper rash goes away and the temperature stays down, that everyone stays healthy so that we can attend the different Christmas celebrations, that Rebekah continues to handle the bolus feeds and takes in more orally so that we can work on getting away from the feeding tube.