I know it’s been a while since my last post, but for some reason life at Baycrest is leaving me more exhausted than before! It’s been 18 days since Mark started this next chapter in his recovery process. He is awake every day for the whole day, and he is usually kept pretty busy. He underwent a very thorough physiotherapy assessment, which took two weeks. He now has a routine where he is taken down to the gym three days a week. He is being seen about twice a week by Michael, a physiotherapy student, and those three days in the gym he is working with Dan, the main guy. Mark is showing progress in his ability to hold his head up and keep it straight, and his abdominal muscles are slowly getting stronger as evidenced by the sitting balances that he is doing. They have to work on these before they even try to get Mark up on his feet. His left leg is still ‘asleep’, as Mark describes it. His arm too. But I am very optimistic that he will recover full use of these limbs. He is extremely determined, if only for one thing and that would be to get out of his wheelchair, or bed, and use the washroom by himself. The man still has his pride! He tires easily so the PT team is very careful not to overdo it. He has a wheelchair that is modified specifically for him and he is quite comfortable in it. We can take him out of his room now!
Mark is not only eating 3 meals a day, but he is feeding himself! What a huge step this was. He is still on a feed for 12 hours during the night to ensure that his weight is being maintained. Hopefully, once we get him back up to his previous weight they can remove that nasty feeding tube from his abdomen. He is also benefiting from his daily delicious smoothie, made by daughter Lila. She knows a thing or two about healthy eating. She uses organic fruits and vegetables, and supplements them with some very important ‘brain’ food, like sea vegetables. He loves it and looks forward to it every day! He must still follow the dysphagia (difficulty swallowing) feeding rules and that is to eat slowly, in an upright position, by the spoonful, and only pureed foods and thickened fluids. This is the first step when you start to eat again after being fed by a tube for an extended period of time. Eventually he will progress to minced foods, and then regular food, but we can’t rush the process. PLEASE don’t feed him if you visit and I’m not there and he asks for food or a drink. He is doing just fine. He is not starving.
He still has the stoma in his throat and his secretions are becoming less and less. He has a mighty cough, which is a good thing. But removing the stoma can’t be rushed. Eventually they will do another tracheostomy assessment, although the tube itself was replaced by a visiting respiratory therapist last week. He doesn’t seem to mind it. He is breathing completely on his own. The tracheostomy is just to help him clear his secretions as well as to protect his airway. We are allowed to cover the opening of the trach tube with a gloved finger in order to hear his voice. It’s so wonderful to be able to talk to him again! We don’t need that communication board any more. He speaks a little slowly, and slurs a bit, but he is forming perfectly good sentences. The language center in his brain is obviously in good shape. He has begun a speech therapy assessment and there will be lots of work for him to do in this department. Cognitively he knows he’s been injured in his brain. He acknowledges that things seem jumbled right now. He knows that his leg is ‘not following instructions’. His short term memory is still compromised BUT – he has just started to form new memories! One of his nieces is expecting next spring and it was kind of nice to be able to tell him this wonderful news every day and see him smile with delight. Just a few days ago I asked him if he knew who is going to have a baby next spring, and he told me! He also knows where daughter Lila has a new part time job and this news is only 3 weeks old! What a relief it is to know that his memory is recovering. Most of the past 4 months is forgotten and it’s just as well. He knows who we all are, and who he is and where he works and where we live and our address and phone numbers, and the members of his family, and every single one of my brothers and sisters, which is pretty impressive if you know how big my family is. 😉
Baycrest is a huge complex consisting of a hospital, residences, long term care and rehabilitation units, among many other in-patient and out-patient care programs. It is also filled with beautiful art! I couldn’t believe it when I was looking for a washroom on the main floor and came across a series of Warhol silkscreens! Every wall it seems, is covered in artwork. Life at the Baycrest
Art Gallery Hospital is pretty good and Mark is adjusting well. He has his own room, right in front of the nurses station. They put him there so they can keep an eye on him. He’s got a TV now and we’re allowed to decorate his room with cards and pictures and plants, anything to make it more comfortable for him. I’ve ordered some special adaptable clothing for him, so he can get dressed when he is taken out of his room. This will make him feel good, and he’ll look good not wearing a hospitable gown like he’s been doing every day for the last 4 months. I keep him shaved, unless one of the nurses does it. This place has a barber so he won’t have to put up with my attempts at cutting his hair. I keep him well groomed – manicures, pedicures, eyebrow grooming, etc. He even lets me moisturize his face. The hospital air is so dry. It took 2 weeks before they found a bed long enough for Mark, despite my (polite) pestering. The poor guy had his knees bent and his feet right up against the foot board. Not acceptable! I was going to suggest that maybe they could sell a few paintings and buy him a bed, but he is fine now, thank goodness. His bed takes up a good chunk of the room.
He has a fabulous Occupational Therapist. She is the one responsible for the wheelchair that fits him, and getting him to feed himself. She is working with him on more tasks that he can do for himself, and memory games and communication in general. He has a dietician, and a social worker, and a speech therapist, and they all seem very invested in him.
Baycrest is a hospital for geriatric care, but they made a special exception for Mark. It’s close to home and parking is much cheaper than at North York General. Even the food prices in the cafeteria are cheaper. It must be seniors pricing. It is kind of sad to be in this environment in some ways. There are a lot of elderly stroke patients on Mark’s floor, and truthfully, they aren’t in good shape. Some of them won’t recover, it’s obvious. I feel a lot of compassion for these poor souls who seem trapped in their bodies and I am even more grateful at the realization of what Mark has overcome. When we left North York General Hospital Mark’s admitting doctor handed me an eight page summary detailing Mark’s medical journey there. It was rather eye-opening to see in print exactly how many diagnostic tests and scans they put him through, the endless bodily fluid tests, the number of trips to the ICU, the multiple units of blood he was given and these terrifying words: “acute respiratory failure”. Did we really live through all of that? Let me tell you, it was a huge relief when we were finally told that Mark was ready to leave acute care in the hospital and truly begin the rehabilitation process. We just have to keep him from any return visits! I got Mark a flu shot last week. I have to protect him. He is strong, no doubt about it, but we don’t want any setbacks. We really don’t know how long he is going to be in the Complex Continuing Care program at Baycrest, which isn’t covered by OHIP by the way. But that’s another story. The hospital is giving us a bit of a break. Hopefully insurance will cover some of it, and they are taking their sweet time letting us know. How can it be that when you are at the most vulnerable point of your life, and you need lots of medical care, that the Ministry of Health determines that you have to come up with a ‘co-payment’? I don’t get it. Let’s just hope that Mark moves onto either Slow Stream Rehabilitation or High Intensity Rehabilitation soon, which are both fully covered by OHIP. I think he can do it. He’s going to use that washroom no matter what!
Once again I must extend my most heartfelt gratitude to all who have written, or called, or communicated in any way, to those who have visited, and those who have hit that embarrassing little “Donate” button. You have no idea how much it means to all of us. We are lifted by your warm wishes and prayers and your generosity is deeply felt. We are living on half of our income, that’s the truth. And that is only possible because Mark has been paying into two disability insurance policies for many years now. Thank god he was prepared for the unexpected! I think we’ll be able to get by and keep the house that Mark so desperately wants to come home to. I am so behind in sending out individual thank-you’s, but they will be coming. If I don’t write or call back, it’s because I am just out of time and/or energy. I spend most of the day with Mark, and when I get home at night, I eat, finish the laundry that I started in the morning, do some cleaning up and then flake out on the couch before going to bed. I also have Maple to look after, our wonderful furry boy. And I am still dealing with insurance companies, banks, hospital finance departments, figuring out how to run Mark’s business, and finishing up with the Office of the Public Guardian and Trustee. By the time I finally get guardianship of my husband, I might not even need it!
Before I sign off, and go to sleep, I have one request and that is to please send a card or postcard to Mark if you haven’t done so already. We are covering the walls around him with the cards we have received so far. This is what he sees from his bed and I know it makes him feel good to know that so many people care about him. The mailing address is:Mark Silver Room 56E 5th floor Baycrest Hospital 3560 Bathurst Street Toronto, ON M6A 2E1
If you would like to visit, please let me know first, as Mark has a schedule now and he is not always in his room. He loves seeing familiar faces, and hearing some good stories!
When you think about Mark, please picture him whole and healthy – walking, talking, eating with ease, and with a clear mind and good memory. I truly believe in the power of collective thought.
Thanks so much. 🙂