Niamh had a platelets transfusion again last night. She was quite uncomfortable with her legs and only fell asleep around midnight. When she woke up this morning, she vomited and her tube came out again. The nurses successfully put a new one on time for her medicines but when it was time for her feed, the tube wasn't testing right anymore. They had to put a new tube in again. Needless to say, Niamh hates it when they stick the tube through her nose, yet she was very good for them. It is frustrating as we can hear Niamh swallow so she is able to, she is just refusing to try, too scared.
She had an ok day on the whole but her neurological problems seemed worse than yesterday = leaning on the right, tone in her legs, etc. She also keeps having the hiccups.
Her white blood cells are starting to recover, 0.7 which is good news. She is however due another blood transfusion this evening due to her low haemoglobin level.
The surgeon would like Niamh to have another CT scan once her blood counts have recovered. If it is showing more fluid retention around the left ventricle, they will operate and place a shunt. If it hasn't got any wore, they will wait and see.
If she doesn't have to have a shunt, then they should be able to do the harvest cell transplant as soon as her white cells are ready. This is needed for the sixth (last) cycle. So realistically we will be in hospital for at least another week.
I asked Niamh if she wanted to go home, she said no, and if she wanted to stay in hospital, she said yes. Hmmmmm.....
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