BMT +17 (Friday, day 33)

We spent all of Friday at the hospital because Naomi is still inpatient status. Her white blood cells are there but not consistent or high enough to be released safely.  The Dr eliminated her antibiotic today with the theory that it is suppressing her WBC count. She also got G-CSF today. We will see if the combination of those two works magic overnight.

Yesterday she had a line and tube change and her pole was reduced to a smaller model which with one “brain” is lighter and faster. She is now literally running in the hallways and we joked with her nurses that they need great running shoes to track her down and catch her. I am still so thankful for her ability to walk/run the halls and not be in seclusion. She played quite a bit of ball today: kickball, volleyball, rough-housing smack ball. It is safe to say that she is ready to run laps as soon as she has a high enough ANC.  She also played video games with Daddy and Cait today. We all hung out in the video room for a while.

Each day could be her last as an inpatient. If her counts are rising a few consecutive days, he will let her out. I had a meeting with the pharmacist today and have all her meds and am fully trained on which need food and which don’t and when she gets them. They provided me with a week pill dispenser to organize it all.

Naomi wanted donuts as soon as she had white blood cells. So we had those today. A friend at RMH picked them up for us in the morning. They were a great surprise for Naomi who had no idea they were coming.

While preparing for bed tonight I was notified through Naomi’s chart that she was receiving platelets STAT. I rushed over to her bed where she was sleeping peacefully but given platelets because she had some bruising on her legs. The STAT report made me so anxious that I knew I wouldn’t sleep unless I saw with my own eyes that she was ok.  So I ran over there instead of calling. I was imagining a bloody nose or some other active bleeding that really concerned me.

I’m undecided whether the phone app with her charts is a blessing or not. It wakes me at 6-6:30am each day with the latest numbers. I get dinged with reports throughout the day. I find myself obsessing a bit now that we are anxiously awaiting a cell explosion. But I’m losing sleep too.

We are at the point where the amount of time waiting is enough to make anyone anxious. So it will be good for me to have Sinéad and Caitríona here with me as a distraction. Naomi is not bedridden and needing 24/7 support which leaves me some time. I was rather lonely before Aaron arrived with the girls. So I’ve decided to keep them both. The Mom in me sees how much they both need me. Sinéad has slept better here with me. She even does well at the hospital because she looks forward to riding the bikes. Caitríona is loving snuggle time with me and we are working on Kindergarten skills while we have all the time in the world. And if the truth be told, I need them more because before they got here I felt lost. After having young children for 16 years, the past month without them was a bit refreshing and a lot lonely.

Naomi adores her sisters and loves having them here. It actually helps her to take her mind off her issues a bit. She will be helping me teach Cait to read and (again) that will likewise be good for Naomi who is not confident with reading out loud but will hopefully become so by helping me help Caitríona.

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