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.
07/16/2012, Kingston, Ontario
Saturday Al was clearly feeling YUK. I did not push him and he did not want to get in his chair. His PCA, Dave, noticed increased swelling in his forehead and was concerned. The weekend resident on call came for a peek. She was not overly concerned but ordered a CT scan. It was deemed superficial and would be monitored and a non-urgent CT scan will be done.
When Natasha, Jonas and I arrived on Sunday the CT had not yet been done. Al was looking and feeling better, so after his morning bed bath we got him in his chair for an outing. I was grateful Jonas was there to muscle the HRT chair. All Al's lines were disconnected for the outing, making it easier. We wheeled him over to the water front and he said he liked the sun on his skin. Over at the park my sister arrived with Miss Bridget. B was inside out with doggie excitement to see her people. Al's affect has been quite flat but we believe he loved seeing her and he was full of kisses for her and she for him. The skies were threatening rain and the humidity was high. Oddly Al's forehead swelling seemed to increase before our eyes. After a half hour in the heat/humidity he was ready to return to AC and we were concerned the heat and humidity was hard on this new "pooling" in his forehead. He did enjoy some water and he asked for some of Jonas' Sprite which seemed to go down well.
Natasha's fiancée, Jonas, is a nurse so he asked to review Al's drugs. There were a few surprises and I will follow up and ask questions about these. One being a cardiac drug and one being a chemo drug (WTF). So I was grateful for his insight and questioning.
Jonas gently suggested to me strategies to help Al through this process and again I was glad for outside eyes and advice. I'm so gung ho on moving forward at lightening speed I forget how slow I need to set the pace and to allow Al to be in control of his own destiny. He is still coming to terms with the new HIM.
All in all it was a great weekend.
07/14/2012, Kingston, Ontario
Our hospital days are taking on a routine. I try to get Al up every morning for some time in his chair. He returns for a nap to be ready for Physio around 1ish. Yesterday the Physio taught me how to aid in getting Al into the chair. This means I can assist any of the health team and not wait for an assistant. Yesterday Al seemed pleased with his first applesauce and 2 cups of water. He did well without incidence and he did it himself. He is working on more difficult exercises for sitting and core stability.
Tomorrow his daughter Natasha will be down. With her help we will wheel him outside for some sun and fresh air.
It is Buskers Rendezvous in Kingston this weekend. I left early last evening to have dinner on a patio with my daughter Kiley and we took in a couple of the Busker acts. It was a nice change of scenery for me.