Yesterday was Indira's Birthday. We had initially been told that we could be out in five weeks, a little longer if Melodina had to deal with infections. I had anticipated two months from the date of the transplant. That meant that while Mel was hoping to be out by the end of March I was expecting the middle to the end of April. Non of us were looking forward to such a long hospital stay.
The doctor's actually scheduled Melodina to be out in June but she caught yet another infection two days before her release date. The summer was tough. We lurched from virus to bacteria and back to virus again. Mel fought disease and the nasty side effects of drugs used for her treatment. She has had several episodes of extreme pain and she spent some time in the ICU. She faced neurological problems successfully but she was afraid to leave the hospital room. Sick people go to hospitals. While she needs to be there for treatment, we all know that a hospital is full of disease.
I had been hoping that we might be out for my birthday in early September. Melodina was noticeably improving but she still faced infections and vital organs that are compromised because of the medications to treat the infections. Yesterday was Indira's birthday. She has slept at the hospital every night for more than two weeks. Melodina is miserable because she just wants to go home. I would love to stay some nights at the hospital and give Indira a break but she won't leave her baby.
Never the less there is hope. They will test Melodina's adrenal glands today. If they have some function the doctors will slowly reduce the immune suppressing steroids that Melodina is on. Cyclosporine which also suppresses the immune system but is a miracle anti rejection drug is also being reduced slowly. If both these efforts are successful Melodina can start to use her own immune system. It will not be fully functional for many months but she can begin to fight her own diseases.
The CMV virus I mentioned in earlier blogs appears to be much less active. We are still trying to get a hold of Artesunate to control the CMV. The North American distributor has denied it for use in post bone Marrow transplant patients. The Australian distributor has refused. I understand that Melodina's doctors are still waiting for a European distributor to respond. The company that manufactures Maribavir e-mailed me and they are writing their protocol for compassionate release of the drug. It will not be available until next year.
Melodina has a Thrush like substance on her tongue. Sunday night the fellow on call took a swab and we are waiting to confirm if it is a fungal infection or not. Yesterday I talked to a medical specialist from another hospital and found out that the treatment for Thrush is non toxic. I approached the fellow on call and a staff doctor from Infectious Diseases and asked them to confirm that the treatment is non toxic in post bone marrow transplant patients. They confirmed this and I requested that treatment begin right away. Melodina is being treated now instead of waiting. This is important because it could spread to the roof of her mouth and down her esophagus. If the lab confirms Thrush we continue treatment, if it is something else we discontinue with no harm done.
Still looking ahead we all see an opportunity to be released to outpatient status as early as next week. Your hopes, best wishes and prayers are always appreciated.
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