I’ll make this quick on this sunny Friday afternoon. Because Allistaire has been pretty grumpy and her eyelids are puffy, two tests were discussed to give us a better picture of what might be going on. Dr. Fong said there is the possibility of blood pooling behind her eyes if there was a fracture. The resident also mentioned that because she has not been eating well, she may not have sufficient proteins in her blood to hold in the fluids that she is being given which could then result in puffiness. I made it clear that I would really rather just have a CT scan than keep wondering if a possible fracture was causing various things. The plan was also made to add a test to her blood labs tomorrow to see how her proteins are doing. Additionally it was noted that her hematocrit was down to 21.5 so they decided to go ahead and order blood for a transfusion. It had not occurred to me she might be ready again for blood but was happy to realize that the blood could account for a lot of Allistaire’s grumpiness and lack of appetite. Dr. Fong also felt that for now it might be a good idea to give her pain meds for chronic pain. “Isn’t morphine just for World War II soldiers?” I wondered out loud. Not for these kids according to Dr. Fong.
Our goal was to get Allistaire nice and mellow for the CT scan rather than having to sedate her. It was already nap time anyway and since we had also discussed the virtues of pain meds, we decided to give Benedryl/Reglan for nausea immediately prior to morphine. It worked like a charm and Allistaire stayed nice and still for the CT pictures and in less than five minutes we left the room and went back for a nap and she could at last drink milk again since there would be no need for her to be sedated. The doctor called a few minutes ago to say that the CT scan showed no fractures and that everything looks great. They’ll just keep watching her and consider what the labs results show tomorrow.
Presently she is supposed to be napping but the nurse just called to say that she is wide awake (2 hours earlier than she should be) and that she had turned off the IV pump and pulled both med lines out. That’s my Allistaire. Looks like even the little bit of blood she’s gotten so far has started it’s work on giving her energy. How much we take for granted. Those little red discs so brilliantly carrying the source of life for our flesh. What joy that blood is something we have and are able to give to her.
For now Allistaire continues to be fever free for almost the past 24 hours. The blood cultures have been negative now for over 48 hours now which means we may be able to take her off of one of the antibiotics. She has not thrown up nor had diarrhea either. I’m sure her little bum is thankful for some relief!
While Allistaire was supposed to be napping I’ve been three floors up sitting by the window and had the joy of having Dr. Pollard walk by. She joyfully told me that she has identified the Pediatric Group in Bozeman that she will recommend Allistaire be seen by and will be making some inquiries to see which specific doctor will be the best fit. I relayed the updates on Allistaire and in regards to the possibility of a feeding tube she said that it really does have its value even if it only ends up being for a week or two. She said that it is best to have Allistaire as nutritionally strong as possible because this will best enable her to fight possible infection. She encouraged me that we would not need to expect any issues with her eating/feeding herself after the tube was removed. It was very helpful to have this perspective and assuring coming from Dr. Pollard whom I respect so much and who has seen Allistaire for the long haul. Of course I am hoping that we’ll still be able to avoid it, but ultimately we’ll submit to the doctor’s wisdom and experience, even if it makes me cranky.
I also get to look forward to having Dr. Pollard provide myself, and any of other AML parents who want to join in, with a teaching session on AML. I have been asking her about this for months and am excited for the opportunity to learn more. It is all so very fascinating. I also asked her to give me the name of the amazing pathologist responsible for her first bone marrow test after round 1. I called and asked to speak to Dr. Michael Loken of Hematologics based here in Seattle. While he was not in, I was able to explain my hope that Dr. Loken would be willing to meet with me so that I could thank him, see the Flow Cytometry machine and learn more about it. The man with whom I spoke said that he was sure Dr. Loken would be elated at this request and that in case I wasn’t aware, he is somewhat of a “rock star in the field of Flow Cytometry.” So I had heard and I’m giddy with the thought of thanking him in person and learning more about Flow. I wish I were a poet and could write a sonnet to the invisible pathologist and his wondrous Flow Cytometry. Perhaps a Haiku?