***A NOTE ABOUT THE TITLE***
From now on, I will be including the letter “T” followed by a –/+ number. This indicates the following:
T=Transplant
-/+ number=the days until and post transplant. In today’s case, –6 indicates 6 days until transplant (Miya’s transplant is next Wednesday). Transplant day is day 0 and each subsequent day will appear as a positive number. (For example, the day after transplant will be T+1.)
Today was a very busy day. Miya began the day with a good breakfast, but steadily lost her appetite throughout the day. She will be fed special nutrient rich milk through her NG tube overnight, for 12 hours to make up the nutrients and fluids she did not eat/drink.
We were told today that up until Sunday evening, Miya would be free to go into the play room on the ward but that has now changed. She has a bug called C Diff (Clostridium Difficile) in her stool and we are now in isolation. C Diff is a bacteria naturally found in the gut of around 2/3 of children and 3% of adults. It doesn’t pose problems in healthy people however it can multiply and produce toxins causing diarrhoea and fever. Miya won’t be treated right now, the isolation is just a precaution.
Today, we continued Campath (the drug that causes massive breakdown of the T and B Cells-Types of cells that protect the body from infection) and started a chemo drug called Busulfan. Among other things, this drugs attacks the bone marrow, creating a tunnel for the new marrow to reside.
A volunteer called Margaret (a lovely Irish woman) came today and sat with Miya for an hour while Chris and I went out to food shop and have coffee, etc. Miya did well and was sleeping when we came back.
Tomorrow, Miya will continue the Campath and Busulfan. She will also begin a chemo drug called Fludarabine. This drug also attacks the bone marrow.
Miya is not her usual self and likes to sit quietly on our knees most of the day. She likes to run around a play a little in the day but by the afternoon, she seems to be exhausted. She has also developed an umbilicus hernia, where her umbilicus is popping through her abdominal wall. This is quite normal, I have been assured.
Umbilical Hernia With Volunteer Margaret
No comments:
Post a Comment