Archive for December, 2013
I have hopefully uploaded our Xmas card on here. We actually just share this walker. It’s really for Wilson to sit down on when we’re out on a walk, in case he gets tuckered out for a minute. I hope you all have a lovely Holiday!
Wilson had been getting slower and more easily confused over the weekend and the days leading up to Thanksgiving. I kept trying to reach his doctors, of course, and his neurologist finally called back late Wednesday afternoon. He suggested I take him to Urgent Care at UCSF on Friday for a ct scan. However, on Thanksgiving, he was much worse, with his right eye half closed. I drove him to the ER at UCSF (so he could be near the neurologist) where we remained until midnight, when they finally admitted him. They discovered he not only had fluid in his brain, but bleeding in there as well. They transfused him with a clotting blood product, and administered a billion tests. The next day, they decided to install a little cone mesh thing in his neck vein, threading it down into his abdomen to prevent a possible piece of the blood clot in his leg from traveling to his lung or heart. That was Friday afternoon. On Sunday morning, a doctor called to say he wanted to remove it, and put him back on blood thinners. Naturally, I asked if he was the same doctor, whom I’d met, who installed it. “Well, no” he said. “Well, have you spoken to him?” I inquired. “Well, no…” He repeated. I asked him not to touch my husband until he had conferred with the other doctor. I didn’t want someone practicing this procedure on him! I don’t care if it IS a teaching hospital….don’t “practice” on my husband! They waited to remove it until Tuesday. Every day, I asked the nurses if Wilson was getting all of his medications which I had listed. “Oh yes” they said. On Wednesday, the new nurse looked at the computer in his room, and said “Well, just not the Exelon patches. The pharmacist doesn’t have that one.” Are you kidding me? He can’t just stop taking that one! No wonder he’s been so groggy, sleeping and even snoring right while I wash his face! I called our caregiver, Scott, and had him bring a box of them on the bus. Outrageous! When I took them to the nurses station, they logged them in and notified the nurse. Within minutes, the pharmacist showed up, apologizing for this “misstep” in Wilson’s care. The next day, I showered Wilson in the deluxe bathroom there, he was discharged at 4pm, and I brought him home before someone killed him! I had spent three days racing around, getting his brain scans & ultra sounds from former examinations (Why don’t hospitals have the capability of sharing files through their computer systems, one might ask?” I never managed to get the ultra sound disc back. Frustrating. And yet, you have to be CHARMING to all of these people. Otherwise you run the risk they will race away from you whenever they see you coming to ask a question, like an abused waiter in a busy restaurant. So now that we’re home, the Social Worker has set up numerous sessions with Tye, the Physical Therapist, Susie, the Occupational Therapist, Slava, the Speech Therapist, and Antonina, the Visiting Nurse. Antonina asks, in her thick Russian accent “Has he any LESIONS? Rashes? Any BOILS or SORES?” While tugging at his shirt as he pulls back. Wilson’s skin is all alabaster, peaches and cream, without a mark anywhere. I keep him cleaner than myself! So I help undress him against all his modest protestations in order to satisfy her desire to inspect him. She is once again satisfied. The three therapists have much more success with him. He likes them! Susie has managed to do the impossible, coaxing him into his studio and getting him to draw for the first time in a year! She is a beautiful Asian girl with a lovely personality and a good sense of humor. “Are you cheating on me now with Susie?” I query. Wilson just grins. He has done two drawings so far. She is coming again this afternoon, when I strongly suspect he will create a third. And Tye has been getting him to do exercises, mirroring his every move! I wish they could come longer than their six week contract, paid by Medicare. I plan to ask what they charge. If it’s not too expensive, I will pay them to continue with money from the Trust. (Thanks to all who donate! Every penny truly adds up, and makes his life and health so much better.)
A few days after bringing him home, I received an automated survey call from UCSF. The last multiple choice question was about how satisfied we were with the stay there. I pressed 2, for only “fairly satisfied”. Within two hours, a live person called to inquire about my answer. I told her about the procedure, then the removal of the mesh. And about them lying to me about his meds. She was pretty appalled, and gave me the address & phone number of Patient Relations, so I could report it. I had already planned to write a complaint, so this made it easier.
To wrap this up, one more thing happened to make life a little difficult. I have been experiencing random bouts of nausea, fever, chills, and fatigue. Of course, I just thought I was getting run down, menopausal, or just OLD. On Monday, after leaning against our claw foot tub, scrubbing it, I noticed a bright red area on my left thigh. I thought it was a pressure mark. Later, after taking Wilson out for a walk, I looked at it again, and it was much bigger, and boiling hot! What the hell…blood clot? Allergy? Infection? I raced around, putting things in my backpack, and drove up to the ER at Davies, only a few blocks away. Turns out I have Cellulitis, an infection deep in the tissue. It’s from a bacteria most likely caught in the hospital. It’s a dangerous kind of staph infection requiring strong antibiotics. It has caused excruciating pain in my leg. I have been on the antibiotics for 3 days now, and the redness is going away slowly. But it hurts deep to the bone when I walk, although not as severely as yesterday or the day before. Tomorrow I will have a whole blood panel screening, since I have been experiencing some other mysterious symptoms as well. Might as well get it all checked out! I’m just glad it looks like the antibiotics are having an effect, or they would want to admit me and administer stronger meds intravenously. Just what I don’t have time for! I told them I don’t have time to get sick…I’m taking care of Wilson!
Oh, I forgot….since coming home, I’ve had to purée all of Wilson’s food, and even thicken his water. It’s harder than you’d think. The first few meals were a nightmare, using my crummy old broken blender. When I mentioned it on Facebook, only a few hours went by before Ron Turner from Last Gasp showed up at our door with a huge box. It is a deluxe new Ninja blender system! I have since been serving up miraculous meals in creamy swirls for Wilson. I told Ron that I have become POWER MAD, and am roaming the apartment, wanting to purée everything in the house. It’s an incredible device, and has made the tedious process of pureeing everything an enjoyable success. Thank you again, dearest Ronald.
Well that’s about it for today. I’ll try to get back soon, and report some hopefully HAPPY holiday news. Happy Holidaze to all of you out there. And many thanks for all the care and generosity from Wilson’s friends & fans.