Well, it's mostly good news! This past Sunday Melodina woke up at 7:00am and we left the hospital before 8:00. It was Melodina's nephew's birthday. Carter turned one year old. The plan was to visit in the morning and be back at the hospital for IV medications by one in the afternoon. We had a great time. Melodina had to walk up two flights of stairs to get into her sister's living room. It was the first time since June that she had climbed any stairs. With some help the task was accomplished.
The time with her niece Hannah, nephew Carter, her sister Harmony and brother in law Mike was wonderful. In addition my sister, Melodina's Aunt Ellen arrived. Everyone had a great time - an indispensable mental health break. It was only the third or fourth time Melodina has left Sick Kids Hospital since June. We left before the "snot nosed little kids" arrived for Carter's party. We have to be cautious to the point of paranoia to protect Melodina from any infections. Her immune system is not yet fully developed. It's not developed to the point where she can safely receive her immunizations. Her childhood immunizations were wiped out with the stem cell transplant. Her immune system is weak like a newborn baby only without the antibodies that a new born receives from it's mother. She has no spleen and a compromised liver and kidneys.
Melodina suffered with muscular pain the next day for her efforts but it was worth it. A few hours freedom from the confines of the hospital room are a tonic that money can't purchase and medicare can't provide. We are anticipating a lot more time away from Sick Kids shortly. The only reason its so difficult is that some of her medications are still intravenous. The nurses spent a couple of days adjusting her medication schedule to accommodate Sunday's festivities. We are sooo grateful!!!
The bad news is she may have chronic Graft Versus Host Disease of the skin. This should be able to be controlled but cannot be definitively diagnosed. We only know that the virtually daily rashes and accompanying insanity inducing itching is compatible with a diagnosis of Graft Versus Host Disease. It is also compatible with drug reactions and other potential causes. It seems to be under reasonable control with steroids right now. Hopefully as we slowly remove various drugs the rashes and itchiness will disappear.
More good news! Today Melodina started on the new drug to control the virus CMS. In a few days the doctors will stop the foscarnate and hopefully we will be able to leave the hospital. The new medication is given orally, not intravenously. This is an experimental treatment for post bone marrow transplant patients and is experimental for use against viruses. It is however promising and appears far less toxic that what she is on now. Keep your fingers crossed. Keep those prayers and positive thoughts coming.
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