We were all a bit disappointed to see Naomi’s WBC count drop today. Before leaving for rounds, I told Aaron that she wouldn’t be released Friday afterall. I was surprised to arrive at the hospital and see Naomi awake because she didn’t text me like she normally does. I asked her why she didn’t text me and she selflessly said that she didn’t want to wake her Dad and sisters.
During rounds, Naomi’s Dr. said he went to the lab and determined that the white blood cells she has are neutrophils and this dip is not rejection. I appreciate that he did not take a wait and see approach but immediately looked for solutions. So, he is comfortable giving the stimulant GcSF. In Britain, the protocol is to give this and then release earlier. In the US, we tend to hospitalize longer (private insurance versus socialized medicine) and wait for blood counts to come up more on their own. His words were “she is too well to be in my hospital and with THIS mom and THIS child and THIS Ronald McDonald House, releasing her for the weekend is preferable. The plan is still to release her on Friday.”
Tomorrow, all her meds will be delivered and a nurse will review with me how to administer her IV fluid and infusions through her line. I will also be trained on the pump they are sending her out with. I did all this after her 1st transplant. So I just need a refresher course. They also provided me with a pill box to organize all her meds. She takes about 20 per day. Last time she had IV fluids 10 hours per day. Now, she will get 24/7 and I will need to give a few meds through her line also.
I have not told Naomi this plan in case things fall apart and it doesn’t work out for whatever reason. She thinks that she is looking at a Monday or Tuesday discharge. I am excited for her to leave the hospital because it will mean less running back and forth for me. I may keep Sinéad and allow Aaron to return to a more normal work schedule. We will still have daily check-ins at the Day Hospital Clinic, but that will be easier than going back and forth multiple times a day as we are now with her being inpatient.
Today was a lot more playing – which is why they want to send Naomi out. Besides her morning infusions, the rest of the day is vitals and nothing else medical. Today we did more bike riding, or rather racing. She literally plays all day. While we finished our game of Life, Sinéad played connect 4.
Sinéad also climbed on the back of the sofa and looked out the window. She was quite content for a lot of the day making me think it is possible to keep her here…. but when she got tired, the bear in her came out. It will only work if Naomi is released to sleep here with me so that I do not have to keep Sinéad at the hospital late into the evening and can get her in bed at a decent hour.
Aaron and I ended up with a somewhat realistic game of Life. He was a secret agent and me a doctor. Combined, we had 7 children – 5 girls and 2 boys! Mine were triplets and a singleton. His were twins and a singleton. We both had a few million dollars more than we have in real life though.
Caitríona had a blast playing also. She was first finished and was Miss Money Bags. In addition to having a high salary, she had her number landed on often enough that we all lost some money to her.
We have no idea what to expect going into tomorrow. Perhaps Naomi will be back at the RMH with us for Aaron’s last night here. Perhaps I will cancel Sinéad’s plane ticket and keep her. So many decisions hanging on labs.
2 thoughts on “BMT +16 (Thursday, day 32)”
Sending our prayers for all to go well tomorrow!
What a good and happy day you had together part of the family. Praying that all of your counts/numbers go where they need to be. Naomi you are a strong daughter of God. I know your parents and family look up to you with how strong you are and always in good spirits. 😜😘 I know I am proud of you!!!! 💕