07/24/2012, Kingston, Ontario
Slowly Al's medical issues are getting sorted out. He will soon be finished his IV course of antibiotics and his bladder/kidney pelvic ultrasound came back normal. He is getting up once daily mostly using a machine to aid in standing and transferring to a chair which is good. He is working on his balance in sitting and standing. Learning his new center of gravity and how to place and shift his weight is challenging.
We are making gains and this recovery will be at a snail's pace. I take comfort in knowing we have all the time in the world. We are not in a rush to live the dream. Unlike so many people, we had three years of living the dream on CloseKnit. Maybe at some future date we can return to boat life or maybe not, but until then we revel in the memories we were fortunate to create. We are not in the category of folks saying "wish we had of done that". We did it and enjoyed it, now health will chart the course.
07/23/2012, Kingston, Ontario
On Sunday Al continued to have increasing pain in his abdomen and bladder area. It was difficult to get clear information from him about how related it might be to peeing. The urologist has ordered some tests to help sort this out. Due to his bladder pain/spasms he was only up for a short time on Sunday and we didn't get out and have the hoped for visit with Bridget. After Tonia left, I helped Al with his supper and when he was settled I walked home.
Tomorrow will be the start of a new routine. I want to be with Al each meal time to help him manage the packaging that comes with a meal. Doing this one handed can be onerous and very discouraging when you are learning to navigate your new life as a one handed person. Of course I am still hopeful that over time Al will regain use of his right arm as I did with my left upper extremity. At 6 years post stroke I just now can open packets of salt and pepper and open milk cartons. So Al has a long road ahead.
I will figure out getting to and fro with the use of public transit, my bike and family/friends when that can happen. But it is important to me to be there to help him at meal time. I get coffee to have with Al at breakfast time and tea to have at lunch and dinner. We continue to have our coffee and tea "cheers" which helps to feel a bit normal.
Al's speech is getting better and stronger. On occasion he has some trouble articulating but for the most part he's improving in that area.
Above Al is trying his best symmetrical smile, we have a way to go yet.
We are into a new week and hopefully things will get figured out and we will experience some more success.
07/21/2012, Kingston General Hospital
Al had another swallowing assessment by Emma early Friday afternoon. Al excelled two levels by passing puree and cruised directly to minced. I was thrilled and he was pleased. The orange note above his bed was changed to reflect his new diet. All meds crushed by mouth also. His first meal Friday night was anticipated. Al was quite excited to tie into some real food. It was a turkey dinner......minced form, which was barely tolerated with a screwed up face. Dessert was a vanilla pudding. Al fed himself but was not keen on the over minced green beans. All in all he was not thrilled with his new diet but he tried his best tolerance. it's a start.
Saturday he had his first shower. Our PCA Dave muscled him into a shower chair and we showered him, I helped by holding the nozzle and I was hyper vigilant about Al falling forward out of the chair. Turned out I was so uptight about Al's safety Dave suggested I not watch. I decided it best he do his job without my help and left the two of them alone to shower away. I returned in time to wipe Al down and polish him off. I then left Dave alone to muscle Al back into bed. When an HRT chair became available (there are only 6 for the floor) we snagged it so after lunch Tonia and I could take Al out for a walk along the water front. Al seems to be having confusion between reality and hallucination? at times. He was confused about his foot wear and was challenging Tonia and I on his brown slipper foot wear. He has blue slip on pseudo sandals, but he wanted his brown slippers. Al does not own brown slippers. It was quite comical really and he was flustered, as were we. Some giggling ensued between us but in the end he let us take him out with the blue slip ons on his feet. We strolled along the water front and he watched boats, kite boarding and generally enjoyed some sun and wind on his face. When he tired we took him back in and he was ready for a nap. After a short nap his 2nd supper in two nights arrived. It was a beef stew type thing, minced. He downed it pretty quickly and did not want the potatoes or green that was minced. He did eat his rice pudding though. This seemed exhausting for him. His nurse had given him some pain medication just before supper and it seemed to be kicking in and he was sleepy. Tonia and I left him to come home for our supper and it was Tonia's intent to go back for the evening. I stayed behind to have a wee break. All in all it was a good day. First shower and Al is staying up longer and longer and interacting more as his energy allows. He is confused at times and has some difficulty in word finding, but I know these things get better with time. Tomorrow is another day.
Yesterday was one big piece of crazy pie. From the moment I got on the bus the craziness started. A man named Carl boarded with his baseball cap on and feathers out the top giving him an Indian flair. He never stopped talking, to everyone who got on the bus. There was more craziness on the bus, but I digress.
Al's new room mate is an elderly gentleman in a neck brace and he thinks I'm his personal assistant. Despite me trying to be quiet when I arrived, as soon as he heard my voice he started his ritual of asking me for water, to get him some wipes, to get the phone AND dial numbers for him. He arrived on Monday and I have not seen one visitor or a wife. Maybe if I quit dialing her for him she might actually come and help out. Yikes. I have shown him repeatedly his call bell and shown him how to summon his nurse and not me.
After I finished attending to Rodney I got caught up with Al. I was upset to see he had his catheter back. My craziness was amplified by the fact I had missed 4 days of my own crazy pill and had not gotten to the pharmacy for my script. Before I had tracked down Al's nurse , Lisa his physio asked if Al had told me his news. I told her I had not had much chance to talk to him yet and she filled me in. She said Al had been much chattier with her in my absence and he wanted to stand, so she made it happen for him. With the help of her assistant Al stood up. And yesterdays plan was to do more of the same.
Unfortunately Al did not participate in physio yesterday after all because he became increasingly distressed with the catheter. It had been re-inserted because of bleeding and clots so he was hooked back up for irrigation. And Al will now be visited by Urology to sort out this newest problem. Crazy Pie. The irrigation itself was going well flushing out his bladder but he started having painful spasms again. I cornered the nurse in charge and asked if he couldn't have something for that pain. She returned after consultation with the charge Doctor and Al was to be given something for pain and it was decided to remove the catheter again until Urology sees him.
So yesterday was a whole lot of craziness. My sister came by and took me for my drugs and helped me make fresh beds. And Bridget came for an over nighter. Nice to have her home for a bit. My sister will come for coffee and breakfast this morning and give me a ride to KGH and take Bridget back home with her. Al's daughter Tonia will come for the weekend to visit.
Oh I forgot to report War Horse was OUTSTANDING. I enjoyed my day away although it was tiring and a long day. I snuck in a wee bit of power shopping, scoring three new skirts. I brought Al back a new War Horse Tee shirt.
A year ago we were making our way north from the Florida Keys and we spent most of our summer in Harbortown Marina at Cape Canaveral. Who would have know Al was growing a tumor. It was confirmed yesterday, the tumor was in fact benign. We will start with yearly MRI's to monitor.
Yesterday was the best day yet. We figured out yesterday why Al has been feeling so miserable and disinterested in participating in his physio. He was having frequent and very painful bladder spasms caused by his catheter. It was decided yesterday to remove his catheter. Within a half hour what a difference it made in his mood. So we are in a learning curve on managing a hand held urinal. It is clearly going to take some time for Al to master this tricky job. Fortunately his care givers on K7 are top notch and super patient. During this transition time Pampers for big boys are being used. After the catheter was out, Al was bathed and put in real clothes, real clothes people, first in 3 weeks. Shorts and a tee shirt and he shaved himself with his new electric Phillips. When Lisa arrived for physio he was not only ready but she was surprised to see him dressed and ready. We are still working on and struggling with balance, but each session there is improvement. Lisa showed me some things I can do with Al when he is in his chair for learning balancing and that are safe. It involves me removing the back rest by putting it in a recline position and then working with Al on balancing. I took Al for a spin for a scenery change and he had an applesauce and a gingerale. And Al most definitely is showing some voluntary pushing of his right leg. It was a most wonderful, heading in the right direction, kind of day. Dr. Wallace said he felt Al was on track from the complications and he is pleased.
I am taking the day off today. My sister and sister in law and I have had tickets for 4 months to see War Horse in Toronto. I have had mixed feelings of going and leaving Al, but I really need a re-charge day. Plus Kiley has agreed to pop in so Al knows he has support around and he understood and remembered I had these tickets and told me to go.
07/17/2012, Kingston General Hospital
I'm glad I'm not a big woman. At least once a day I crawl in beside Al for some snuggle time. We were caught in the act by Natasha on Sunday.
Yesterday Al was in a funk, it could have been from all the activity of the weekend. He was not up for participating in his physio or getting up in his chair. There was still concern about the swelling and he was sent off for the CT scan.
I will be going in shortly and hope to see what is being said about anything new they saw. I do know now that the "chemo" drug is really a prophylactic to shrink the size of his prostate in the hopes of allowing the catheter to do its job better. The catheter is a source of irritation to him for sure.
Today is a new day.