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Still fighting the uphill battle

Posted Jun 29 2010 5:11am




I'm still fighting the uphill battle. Because of my illness myelofibrosis, I had to quit my part time job. The oncologist recently put me on REVLIMID.

Things have not gone well with my son Jeffrey. Last month I went to visit him at Rose Meadow, and I was very upset to his his state of mind, mentally and physically. It was on a Sunday, so the nurse informed me that she was only a week end nurse. So I would have to call the head nurse the next morning. Come Monday morning, before I had a chance to call her, she called me. She informed me that when they went to get Jeffrey up, he had blood in his mouth. Then she told me that Jeffrey had a fall in the shower on Friday. They seem to imply that the blood in his mouth and the fall had nothing to do with the other? So upon allowing 3 days to go by, they are now informing me of the fall, and sending him to the hospital?! I strongly feel that fall in the shower was the cause of the blood in his mouth. And I was very upset that he was not admitted to the ER right after the fall on Friday.

Before all this happened, he was considered to be high functioning, and he was able to communicate with us. The doctors informed me that he had a small bleed to the brain. He was hooked up to a suctioning machine for fluids he could not handle, oxygen, antibiotics, and other fluids. When I got to the hospital he appeared to be in a semi coma. His eyes were closed and he would not reply to me. On top of the brain bleed, he had to much coumadin in his system, (he was taking for a blood clot) which made his blood to thin. His immune system was so weak, that on top of all that he got aspiration pneumonia. The doctor informed me he had encephalopathy of the brain.

I researched it online - The causes of encephalopathies are broad. Additionally, the symptoms are also broad, ranging from mild changes of consciousness to coma or death. There is a wide variety of conditions that cause encephalopathy. The disease may vary in severity from only subtle changes in mental state to a more advanced state that can lead to a deep coma. Encephalopathy may vary in severity from only subtle changes in mental state to a more advanced state that can lead to deep coma.

More then likely Jeff's condition was caused from the increased intracranial pressure from the fall he had in the shower. Following that incident, he was finally hospitalized. Then came the cat scan which showed a small bleed to the brain, diagnosed as a small blood clot. Following that he came down with aspiration pneumonia.
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