June 29, 2014

Kenny is STILL in the hospital. I think that this is day 20! His condition has remained about the same...he still has no use of his left arm, and only partial use of his left leg. He also still has some facial paralysis on the left side. The goal has been to try to get him placed in an outpatient rehab facility, as he still needs 24 hour care. However, none of the rehabs are willing to take him, due to the fact that he is currently receiving chemotherapy. Apparently, they must assume all expenses associated with his care, and the Chemo is too expensive and would cut into their profit margin. There seems to still be some hope that he will be accepted into the hospital's own rehab program. So far he's been declined by them twice, but is supposed to be re-evaluated tomorrow. Fingers crossed!!! Meanwhile, he has only been able to work with the physical therapists on the oncology floor, and they are somewhat limited in what they can do with him because they lack the proper equipment. Thankfully, on Thursday and Friday, they were able to get him up to the orthopedics floor and work with him on the parallel bars. When he has the bars for leverage, he has been able to pull himself up to a standing position and hold himself there for about a minute at a time. At least this is some progress, because I feel like the longer he is in bed, the more his muscles will atrophy, and the less likely it is for him to be rehabilitated. There also seems to be some disagreement between all of the doctors over his steroids. The Doctors had put him on a high dosage of Decadron in an effort to control the swelling in his brain until the Avastin kicked in. Now that he has had two doses of Avastin, the Docs at Sloan Kettering feel that he should be tapering down to a lower dose of Decadron. The Docs in Danbury, however, don't want to lower the dose for fear that the swelling will come back...even though the Decadron may be responsible for muscle weakness and confusion, and other ugly side effects. I am agreeing with the experts at Sloan Kettering, and I don't feel that he's being given a fair shot at recovery when the Decadron may actually be adding to his problems. So hopefully, the steroid issue will be resolved soon. I just wanted to say a huge, heartfelt Thank You to everyone who has so generously offered their time to visit Ken in the hospital, and bring us beautiful meals, and help out watching the kids. I cannot express how grateful we all are for your love and support.