07/13/2012, Kingston, Ontario
Yesterday I got Al up and moving early. I want him to build his endurance. So he wasn't keen to get going but I'm in tough love mode and staying in bed was not an option. I know how tiring it can be healing a brain, but I also know you have to make efforts. So We got Al into his chair before 10 a.m., We trekked to the sun room, did a few laps of the hall. I am on a new fitness routine. When we arrived back in Al's room, Emma the sppeech language pathologist arrived for his swallowing test. I had tried to prepare Al for this, and clearly I dad forgotten some of the requirements. Al had difficulty doing a hearty cough, and his tongue movement on the right side is extremely weak. He did well with water but the pudding was sluggish. After some word sounds and tongue maneuvers, Emma deemed Al was only able to handle water, tepid tea and/or coffee and applesauce. He appeared disappointed in this. I think he was envisioning his next steak. I was not surprised and had hoped for more. But realistically we need him to be safe and it will be a slow process getting to even pureed food. He will keep getting his nutrition via his feeding tube. I look forward to helping him with his first applesauce today. Maybe followed by some tea or coffee.
I have not pushed him to get up yet this morning. I had to go to the dentist, which I hate. Al seems in discomfort of some kind this a.m. but he is not able to quite communicate the exact problem. So I'll give him a break this morning but I will encourage him to get up when Lisa comes this afternoon.
A friend visited last night and it was nice to get a differnt perspective. She felt Al was the same guy inside. He puckered for a smooch and made the appropriate facial responses to our chatter.
07/12/2012, Kingston, Ontario
Yesterday morning Al seemed still a bit out of sorts but I attributed that to less than 24 hours on his new antibiotic. I opted to leave him alone during his physio session to see if he would be less distracted with me there and more engaged with Lisa, turns out it didn't make any difference. I think Lisa agreed his lack of enthusiasm is from his new infection. After his physio he is always hoisted into his special chair for sitting upright with a goal working towards 2 hours in an upright position. I wheeled him down to the sun room for a different view. Our friend Andrew arrived for a visit with a tea for me. After a short time Al made it known he wanted tea. He has not yet had a swallowing test and no instruction had been given since his move from ICU that we were allowed to try anything by mouth. I told him I would indulge him as long as he took small controlled sips. I got a second cup and spoon and fed him some sips. Patience has not ever been his strong point and he soon communicated he wanted to be in charge of the whole cup. This request made me very nervous because if he choked and got a new complication with a pneumonia I might be put over the top. I explained to him the importance of taking it slow and he seemed to understand my instruction. So with fingers crossed I let him have the cup. He finished the cup and did well. When I returned him to his room I told his nurse our secret. She was delighted and immediately spoke to the team charge and a request has been made for the swallowing test. I hope it happens today sometime. I know he can manage liquids I hope he can manage applesauce, cookie, muffin and all the different textures. He is still paralyzed on his right side with little to no improvement there. But he is fine with his left hand although it is not his dominant hand.
Historically hand movement takes the most work to come back. But we will celebrate the achievements as they come. I would expect assisted standing will happen in the not too distant future. At least that is my hope for him.
07/11/2012, Kingston, Ontario
The view from the sun room on the 7th floor over looks Lake Ontario. Its hard to tell if Al likes going there for his walks. Some times we see kite borders. Very fun to watch.
Yesterday Al increased his endurance both sitting bed side and his time in a chair. Ideally Lisa wanted him in the chair for 2 hours but Al could only tolerate it for 1 1/2 hours. He was feeling down yesterday and I believe it is because of this new infection. He was taken to xray to have a PIC line inserted that will give more efficient delivery of the antibiotics and blood can be drawn from it as well saving more pokes to his body. It was installed to the under side of his upper left arm, so he can't fiddle with it. Yesterday was the first since ICU that he expressed wanting any thing by mouth. I will speak with the powers today about where we are in terms of considering a swallowing test.
Can't believe its been 2 weeks we have been on this new journey in our lives.
07/10/2012, Kingston, Ontario
Despite the circumstances I had a lovely birthday. My day was full of birthday calls, cards and gifts. My Sister arranged for us all to meet at a down town restaurant (Pasta Shelf) for a dinner and I finished my meal with a huge slice of decadent chocolate cake ( I shared it).
Al's room mate and his wife had tickets to Mamma Mia but because Harold was too sick for a pass I was offered the tickets at a hideously reduced price. So after supper my friend Donna accompanied me to the KROCK to see the production. I fell asleep singing Abba and woke to SOS this morning after a sleep that would rival the dead.
Funny how the best gifts come in such non-tangible form. Yesterday Al sat bedside without incident. And he struggled a bit to find his new center of gravity, but Lisa his Physiotherapist talked him through where he needed to place his hand and what to work toward. After sitting up several minutes he was air lifted into his chair and we strolled to the sunroom and Al had a couple of visitors. We have now moved into goal setting, so the goal is to start sitting bed side once a day and get into the chair for longer periods, building strength and endurance. Lisa was very pleased with today. I was also excited and deemed the sitting success a highlight and my best birthday gift.
Al has developed an infection in his blood which is being treated with intravenous antibiotics. Seems there is a continuous circus of small things to overcome. His sodium and electrolytes are remaining stable and that is great news.
07/09/2012, Kingston, Ontario
I took the weekend off from blogging. Al did a lot of sleeping and resting. Not much therapy happens during the weekend. The high light seemed to be the new Phillips shaver I purchased for him, it works well. Al was agitated during Saturday night and mucked around with his catheter which is irritating him. The sodium levels are where they should be and he is responding appropriately.
I was treated to a pre-birthday brunch yesterday at Aqua Terra, it was lovely. I am optimistic this week will shape into something good.
07/07/2012, Kingston, Ontario
The brain is such a complex piece of machinery. If one thing is out of balance it creates a domino effect.
Today was a better day, Al was responsive and puckering for a kiss and was back to using some words. It turns out that Al's blood pressure was up so he was given a drug to help that but the choice of drug made the sodium levels in his body go very low. This was absolutely the cause of his lack of a willingness to engage in anything over the past three days. The drug was stopped and changed and this morning the improvement was mind-boggling. To quote a good friend, former employer who happened to have been an endocrinologist "Yes low levels of sodium can really cause great changes in brain and body function. Getting it back to normal will be a big help, and yes the pituitary and all parts of the brain do not like surgery. There is every reason to expect that as the swelling subsides and healing occurs, the gland function should return.". Charles just really confirmed what Dr. Wallace was telling me.
Asking about bringing in Miss B had become moot and I know once Al gets to rehab. she can visit. The day was sailing along smoothly until his physiotherapist Lisa with the aid of her assistant tried Al at sitting at the bedside again. Unfortunately he suffered a small seizure and so physio was aborted just for theday. He is fine now and seizuring is very common post surgery. This should not be taken as a set back. With the weekend on us again Al will rest and keep healing. The weekend will no doubt whiz by faster than a teenager past curfew with beer on her breath and we will be into a new week of therapy and progress.