Day +8 and Day +9: hello WBC, bye bye NG Tube
This is Alexx writing again. Mom is still very weak and sleeps most of the day. We are hoping to see improvement as her white blood cells come back. Continue to keep her in your thoughts and prayers. She appreciates it. And so do we. We miss Long Beach and the incredible extended family we have there. Can’t wait to see you all on the beach this summer. Xoxo
April 15th, Day +8
Today was a quiet day. Breathing is okay, I still can’t speak in full sentences because I get winded. I continue to feel very weak and tired. I sleep most of the day. I got out of bed twice today to sit in the chair.
Dr Rowe thinks my white cells are going to go up soon–he “can see it in my eyes”. He says I have more clarity. The fellow says that they are likely going to try refeeding me on Sunday. I can’t wait to drink water and juice and taste food again. Also, they said it’s possible that I might be discharged in 2 weeks. Fingers crossed.
My blood pressure is still high. Systolic has been 160-180 and Diastolic 90-110. They give me a sublingual pill called Captopril that helps slightly. Alexx realized the HTN is partially attributed to steroids. I have been getting Hydrocortisone as a pre-medication for my platelets since I had a mild reaction during infusion.
It feels good to get out of bed again. I’m able to move around more easily but I get tired from the slightest movement.
April 16th Day +9
Last night was rough. I’m starting to have bone pain almost everywhere. My arms, legs, ankles..all of my joints. The nurses told me that this is usually a sign that the my white cells are staring to come back. And guess what?!? My white count is 0.2 and my Absolute Neutrophil Count (ANC) is 140. The ANC is one of the most important numbers to track. It is a measurement of engraftment, meaning the stem cells have found their way to the bone marrow. Once the ANC is greater than 500 for 3 days, I am deemed engrafted.
The Doctor came in this afternoon while Dakota was with me; Alexx and Ric had gone back to the apartment for a few hours. He said it was time to take the Nasogastric tube out!!! The team felt I was ready because the NGT tube output had decreased significantly. I am SOOO happy to have it out. They let me drink water and it was incredible. I hadn’t had anything to drink for almost a week. Tomorrow they might let me eat food.
Melon ices with Dakota.
Even though everyone keeps telling me how much better I am, I want to FEEL better. I want to be able to move without feeling exhausted. To have conversations with my family. To walk. But I know it’s a process and I am trying to stay patient. Day by day. Moment by moment.
A drawing Alexx made me. She makes a new one every day. My room is colorful and decorated now. And the pictures Dakota brought really cheered me up.
Love you all.