06/30/2012, Kingston, Ontario
I actually take comfort in the blog and updating our friends and family. It allows me to reflect on the activities of the day and it will serve as a record of Al's progress. As most of you will know I survived a stroke in 2006 and I have done way better than was ever expected but I have never regained fine motor skills in my left hand so I can only type one handed. By referring our friends and family to the blog means I only have to poke out the information once.
To day is good news/sad news. I'll start with the sad.
My handsome man will remain handsome no matter what. Al's left eye, will remain shut. Nerves and muscles have been damaged so he no longer has the ability to open that eye lid. Perhaps he'll live the rest of his life in true pirate fashion with an eye patch but he will figure that out. He still has vision in that eye, he just can't use the lid. In fact a few times today he manually lifted his eye lid himself, and his eye was tracking. Much better than yesterday when his pupil wouldn't even react to light.
The good news is progress was made in his language. He was trying to talk more and although it was hard to understand we encouraged him to talk slower. In his mind, he is speaking perfectly but its not coming out the way he thinks it is., This is normal, I experienced this in the very early part of my stroke. But the fact that he is using more words is very encouraging.
We saw just a tiny bit of volunteered movement in his right leg yesterday. It is enough to make us hopeful for more recovery in that area.
Yesterday he was asking for food. A good sign. He just doesn't dig Ensure and equivalent via a feeding tube down the nose. I think he is likely in withdrawal from butter. Al loves his butter.
He will have a swallowing test on Tuesday. And he had some physiotherapy and the therapist felt flickers of voluntary movement in his leg. In my experience (hence the title)the right upper extremity will likely be the last to show major improvement.
At the end of the day I assessed the gains and I will take his language returning over physical movement hands down. I know the road to rehabilitation and I will lend all that I know to helping Al navigate this difficult road. And it is hard. It can be discouraging. I am very sensitive to making sure I fill in the blanks for him. I am trying to explain to him what is happening to his body and why certain things are being done and when. That was an area that when I was a patient I felt they failed me. I know backwards why now but it would have taken some anxiety away then if it had been explained to me.
The girls and I had stepped out for a break and supper last night. My sister came to fill in, in case Dr. Wallace came by, which he did. Dr. Wallace was very pleased with the gains of the day. And Al displayed his leg movement for him on command.
The girls and I will be in at 8 this morning to catch Dr. Wallace ourselves. The poor guy has to be the one on call this lovely holiday weekend.
Again this is still very early in his recovery to know his final out come. They are still questioning a small stroke and a CT scan will be done Tuesday. You'll be hearing from me.
06/29/2012, Kingston, Ontario
I'm posting this early before I go to KGH to see what this day brings. Yesterday morning I was feeling pretty discouraged. There had been no improvement in Al's condition and the neurosurgeon (not his) in charge of yesterdays rounds was not sounding very encouraging. It was confirmed Al has aphasia (google it, basically the inability to talk often because of a brain insult of some kind).
However, by around 2 p.m. yesterday Al tried to say his first words. They were not perfect, but he was trying to communicate and that was a huge step forward. We know he has feeling in his right arm and leg but there is still no voluntary movement there.
Early last evening I had a visit from his own Neurosurgeon, Dr. Wallace, and I must say as far as physicians go, he has the best bed side manner of any I have ever met. He took time to speak to me, and to Al. Answered all my concerns and was not rushed at all. He suggested that we try to word our communication with Al so he can answer with a yes or a no in this early phase of Al exploring his language. Dr. Wallace also explained that the hypothalamus and pituitary have been affected. Actually his words were "they seem to be on a holiday" and so the fluids in Al's body were going a bit crazy. This has been corrected with hormones.
A feeding tube was also inserted through his nose to his stomach yesterday for nutrition. Because he is not talking they can not determine if he can swallow so he can't eat. Over the next several days, depending on progress the feeding tube may be inserted via an incision in his side. This would make it easier for Al to speak and help the professionals monitor his swallowing ability.
Now the GOOD stuff is, Dr. Wallace still feels confident (and in his experience) that this is all related to the brain swelling and as that subsides we should see improvement. So with that in mind, I am anxious to get back to the hospital to see what ground we cover today.
Al did show his humourous side yesterday and when he was asked to stick out his tongue, he was able to. Now to show displeasure or sarcasm to us he will stick out his tongue. A very good indicator that most of our communication can be non-verbal. He responds to commands and he proved he can still pucker up for a kiss.
Dr.Wallace told us both this recovery was going to be hard work and he asked Al to try to stay positive and not "lose his noodle" during this process.
Both of Al's daughters arrived last night and they will stay for a few days. Al seemed delighted to see them.
During this time Miss Bridget has joined the Crew at my daughters, and although she seems exited to see me, she is having an absolute blast with her (technically) neices and nephews, and running in the yard.
Onward and upward.
06/28/2012, Kingston, Ontario
When I returned to the hospital last evening Al was in radiology having a CT scan. They were concerned about the "way he was presenting". Which in our speak meant, he was not coming out of the anaesthesia with the speed expected, and his right leg was slow in responding and his right arm was not responding at all. There was concern that he was not trying to talk. The scan showed no blockage but doesn't completely rule out a small stroke. These setbacks could be due to just the swelling, the next 48 hours will be crucial and time will tell. And the CT scan was not conclusive. Last night he seemed in pain and mildly agitated. He was also putting out way too much urine but a drug has been given to correct this.
I plan to be at his bedside by 8 a.m.and I hope to see improvement throughout the day.
Will report back.
06/27/2012, Kingston General Hospital
Its been a long day and I'm bagged, but I'll quickly update you that the surgery was about 6 ½ hours and Al made out well. The tumour was "grizzly" and not the two day old jello texture that was expected. Dr. Wallace is still confident it is benign and specimens have been sent to pathology. There seems to be some weakness on the right side but I am told it is likely from the anaesthetic. Al is pretty out of it still and so I have not heard his speech. I am at Kiley's for a bite and a wee nap. I will return this evening to visit him in ICU. Will keep you updated. But all in all it appears to have been successful.
06/27/2012, Kingston General Hospital
I just got an OR update from Suzzette the OR liaison nurse. Dr. Wallace sent word he's about 1/2 way there, and things are going well. We have not been assigned a bed as yet because there is a shortage at the moment. This means Al will be spending the night in recovery, which may not be a bad thing. I bet there is more close care there.
I'll be in touch y'all.
The hospital knitting is going well, its taken me a while to get the mojo going.
06/26/2012, Kingston, Ontario
We will be up at the butt crack of dawn to be at the hospital for 6:30 a.m. Wednesday morning. That is the time we are to be there but surgery won't commence until the paper work and final chats with the anaesthetist and neurosurgeon happen.
We just got home from the final MRI, it will be very up to date and ultra current. I will do a post as soon as I am able post surgery to keep y'all informed.