On Sunday evening, the phone rang and no one answered when I said "hello". Miya woke up and was FURIOUS!! It tooke me forever to get her settled again and she managed to get her NG tube out. She was on a milk feed at the time. Milk was all over her and all over the bed. The NG tube was reinserted on Monday morning.
On Monday, Miya's red cell count was low and she was to receive red cells Monday evening. The lab sent up the wrong blood type (Miya's pre-transplant type, rather than her post-transplant type) and Miya was given the transfusion on Tuesday.
Miya also developed some mucositis on Tuesday and we have a special rinse we swab her mouth with 3-4 times a day. She also developed a couple of small patches on her bum where the skin was peeling back. A couple of nights ago, she had a student nurse looking after her and I don't think she knew she was meant to change Miya's bum in the night. I slathered her bum in the 50/50 cream they make up here (half Vaseline, half Metanium) and the nurse she had last night did the same, and this morning her bum looks much better.
Miya woke this morning at 11.00hrs and refused food and water. She was put on a boost Pediasure feed. She is now sitting on Chris' knee.
The doctor told us this morning that her neutrophils are nearly zero. They will remain at zero until she begins to engraft. At this time, she is susceptible to fevers and infection. This is normal and she will be treated with antibiotics as required.
Also, if Miya's weight begins to drop (so far it's holding steady at her admission weight) or if she develops mucositis in her gut and begins to vomit from the milk feeds, she will be put on something called TPN (Total Parenteral Nutrition). This is given intravenously via her Hickman line and to begin, she will probably be on it 24 hours a day.
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