I really hate prednisone. David has all of the infrequent side effects: irritability, confusion, mental impairment. He is tapering off of it but this will take 6 more days. Last Thursday his platelet count was 29. Today it was 29. Dr. Vaughn saw us today and we discussed options and I agree with him totally...he also studied under Dr. Macik and participated in the study she published. He also consults with her on difficulty cases like David. I told him about David's symptoms including that last night he asked Than, Katya and I, Why am I still living. My quality of life sucks. I want to die. I ascribe that mind set to the prednisone. I also told the doctor about Saturday night/Sunday morning confusion and that he thinks everything of TV is a repeat. He has had CT and PET scans that do not indicate any probably problem in his brain. Dr. Vaughn wants to give David Nplate injections weekly to raise his platelet count and prevent bleeding. David has had bloody mucous when coughing and blowing his nose. David said. No, No, NO, NO, NO, NO, NO. Go home now! Put on his coat and walked out. I started crying and Dr. Vaughn said that once he is off prednisone he will regain his former mind frame. He invited me to call him anytime and said that he will make time to treat David right away if he changes his mind. Instead of coming home David agreed to go to Costco with me and to walk in the mall. The mall walk that formerly took us 30 minutes took 1 1/4 hours. He walked like a glacier and took two bathroom stops and three rests. During one rest I went to the card store to get BD cards for grandchildren and he was asleep when I got back. He held onto his walking stick with one hand and me with the other for the last third of the walk but REFUSED to cut it short. (That's my David. The lower doses of the devil drug are letting some of him back to me.)
At home I gave him lunch and he dozed off on the couch. About an hour later I noticed that the feeding tube was not just leaking, it spilled out to soak his clothes, ruined his checkbook, soaked his credit card case and all of the cards, soaked his iPhone case (that I removed in time to save the phone itself). The cushion he sits on and the couch slipcover were soaked. Luckily the Scotch guard saved the couch cushion. I went into his bed and found that he'd leaked there last night and it wet the sheet, mattress pad and the allergy cover but spared the mattress. I had a protective and that the hospital uses but that was for urinary protection and didn't go far enough up. Well several loads of laundry later all is clean. I was challenged and went to the drug store. I got maxi pads and self adhesive ace bandages and Jerry rigged a pad around the tube and then held it tight to the skin with the ace bandage wrapped around his entire body. It seemed to hold in the short run. I made calls to the department in the hospital and to Dr. Clemo without success. If the leak continues, it's the ER. We're just not equipped to deal with anymore.
He'd been looking at our legacy picture on the wall and said he looks good with teeth and wondered where his were. I found them today and got him denture cleaner and adhesive. Tomorrow he is going to try to get them into his mouth and see about wearing them to the Great Lives lecture tomorrow night. I told him I want to go if he is not dripping stomach fluid from his feeding tube.
Those are our adventures today. I really really really HATE prednisone.
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