I seem to have lost all track of time in this place. Days seem to run into each other, and time runs together.
Miya has not had a temperature since the first night of Campath. She doesn’t have diaper rash, and hasn’t had vomiting or diarrhea. Her blood pressure and weight have also been good. Her appetite is lagging a bit and tonight, she will be having some IV fluids to top her up. She is also excreting more liquid than she is taking in. These IV fluids will help replenish the fluid she is losing.
She sleeps a lot, and is grumpy. Sometimes in the evening, she wants to walk around a bit and push the IV trolley.
She is very cold, all the time. Her skin is cold to the touch. We keep her bundled up all the time now. The doctors are checking her for infections. A Hurler’s child in the past developed an infection after being cold for several days. If she does have an infections, they will begin antibiotics. We will know the results this week.
Yesterday was the last day of Campath (a 6 hour infusion) and today is the last day of Busulfan (Two infusions of 3-4 hours each, one taking place through the night. Tomorrow she will have her last dose of Fludarabine (about an hour) and her regular ERT (which she will have weekly for 4 weeks. Hopefully by then, she will have engrafted and will be producing her own enzyme).
We have not seen any mouth ulcers yet, and her mouth was clean and clear of any redness when the nurse checked this morning. She has her teeth brushed twice a day, and has her mouth swabbed with mouthwash twice a day.
Chris and I take turns holding her on our laps all day. Sometimes she wants to look at books, but mostly she wants to hold her seahorse and stare or sleep.
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