The days are flying by here as we approach “day 100.” We had a wonderful long weekend at home together. Lauryn had a swim meet that I was able to attend. I am so happy to have been there to see her swim. It was too hot for Naomi to attend though. So she stayed home and played with the other girls and her brothers.
Today’s lab visit was quick and easy. Her counts are all fantastic. ANC 1420; hemoglobin 12.6 and platelets 246k. All her virus scans from last week were negative. It is really important to monitor that since her immune system is suppressed to help the transplanted cells thrive but the risk is that viruses can run unchecked if not checked for often. Her care plan is to test twice a week for those viruses.
Naomi has had some really good days lately with regard to drinking water. If she continues to drink well for me at home, I can ask that we again decrease fluids given through the IV. Her creatinine levels have been well within safe range since arriving home. Another good week and I will suggest we decrease the IV fluids. That is good bargaining power for me to get her to keep drinking.
We return to the doctor’s office on Friday for more labs and her monthly prophylactic IV of pentamidine. In WI she had pentamidine through a nebulizer. Here it will be administered through her IV which will certainly be easier since the taste in the nebulizer was horrible and required her to suck on hard candy just to tolerate it.
Her hair is filling in and her days are filled with playing, just as they should be. We have been working hard at finishing up the school year. I wanted to be done by the end of May. I will be content to be done by the end of June. It is all good because I actually have until the end of the calendar year if I really need it. We are so blessed to have had such amazing support from our school advisor. It helps that we homeschool through a Catholic school and our advisor helps me to focus on the day to day stuff and keep the big picture in focus. I can’t imagine having to have gone through the past 6 months without us having been homeschooling.
I also want to say that despite my last post, I know how much support we have from so many of you and we are thankful for all of you.