Update from Mary

What a busy week it’s been! Once the isolation scare was over Mark was ready for visitors. He especially appreciated a visit from an old friend (from his camp days) who drove all the way from Cleveland, with his guitar. Mark LOVES music, particularly live music. I truly believe this is a great therapy for him. Mark really enjoyed the private concert in his room. His buddy Tom even sang to him, Mark watching intently. It was beautiful. A few days later, Jordy came by with the new Wilco album on his iPod and his headphones, as opposed to the ear buds Mark is used to. Mark gave Jordy the big thumbs-up several times, and moved his right leg in rhythm to the music. There was a little head-bopping in there too!

On the medical side, Mark is slowly putting some weight back on, which is great! He’s doing really well with the physio therapy exercises. His coordination of his right side has improved immensely. He follows the physiotherapist’s instructions most of the time. His left side is still mostly paralyzed, but there are times when we can notice the smallest muscle contraction in his thigh when he is instructed to lift his leg. He is certainly trying. Yesterday he managed to kick his left leg out of bed and onto the floor somehow. Remember, Mark is 6’4″ and even though he has an extra long bed, there are times when it’s just not long enough. When he felt his left foot resting on the floor, he instinctively lifted his leg and tried to put it back on the bed. I got so excited when I saw this, I said to him “Mark, lift your left leg!” but he didn’t. We know he CAN lift it. He just needs his brain to make the connection. I’m sure this will happen eventually.

I spoke to his doctor this afternoon who is encouraged with Mark’s progress. He believes that Mark is going to clear the pseudomonas from his lungs on his own, and that means that the trach will be removed one day. It is not a permanent thing, thankfully! He is coughing less and less, with fewer secretions. I have no idea how long this will take. We still need to be patient. The doctor says Mark looks brighter, which is true. He shook the doc’s hand and smiled at him for the first time! Mark continues to whisper to us daily. He wants to go home. Sometimes he asks to use the washroom, and I have to remind him that he can just ‘let it go’. Obviously his short term memory is still compromised. I really hope it doesn’t stay like this! This is one of the first things that went when he had his stroke, so maybe it’ll be the last to return. He is also showing signs that he can swallow. The doctor is sending the speech therapist in on Monday to see if Mark can pass the swallowing test. This will be huge if he does! Lately he’s been asking for food and water. He hasn’t had anything in his mouth for three months. I try not to eat in front of him anymore because he keeps asking for my food. Once we get rid of the feeding tube, then we can start to give Mark some healthy food for his brain, instead of that stuff in a can.

Finally, I’ve signed the papers for Mark to be transferred out of the hospital and into a complex continuing care facility. There are only 5 places in Toronto that can handle this type of patient. I spoke to our social worker today. There are beds available at our number one choice and they are considering Mark’s application this weekend! I won’t jinx it by saying which facility it is, but I have a good feeling about it! Please keep your fingers crossed for us. We might be leaving the hospital next week!

One last note – Mark can be a real rascal even in his condition. As Ariel and I were preparing to leave his room tonight I asked for his right hand so I could put the restraint on it. He begrudgingly gave it to me. I strapped him in, which I absolutely hate doing, and he made a pretty sad frown, started moving his hand the best he could, and then whispered “my hand.” So I unstrapped him to see if he had to scratch his nose or something. He didn’t do anything. He just wanted his hand free. I don’t blame him. I tried to explain to him why we have to restrain his hand. I asked him “Are you going to try to pull the tube out of your throat?” He nodded “yes”. I told him that that would be very dangerous and only the doctor can remove the tube, therefore we have to make sure that he doesn’t pull the tube out. He reluctantly gave me his hand again. I strapped him in, and then Mark gave me the middle finger. Ariel started laughing her head off. I said, “Mark, did you just flip me the bird?” He nodded yes, while trying to stifle a grin. Very funny, Mr. Silver. Very funny!

We got our goodnight kisses, and left with smiles on our faces.

Advertisements

Update from Mary October 20

Mark and his roommate Teresa have both tested negative for MRSA. The isolation order is over, which is a huge relief! It’s so nice to be able to kiss Mark without that stupid mask over my face.

Mark continues to slowly improve. He is trying desperately to speak and he is frustrated. I’ve shown him the front page of the newspaper a few times now and asked him to point out certain letters. He has been successful at times, and other times not so much. But I asked his doctor to bring in the occupational therapist and today she arrived. She brought with her a clipboard for Mark with two pages of communication pictures. He seemed very interested in it from the start. He indicated that he was tired and wanted to go back to bed. He had been sitting up in the chair for about two hours when the therapist arrived. I had just finished shaving him. (I’m getting pretty good at it too!) So I had the nurses put him back to bed. After that he just wanted to relax and wasn’t too interested in the communication board. He didn’t even want his music. I think there are times when he just wants to hear the room activity, which can be very quiet or somewhat disturbing depending on how Teresa is doing. Sometimes she cries a lot. Mark doesn’t like this. I try to reassure him that she is okay and being taken care of. (She is a woman in her 40’s, and she is not a stroke patient.) I’ll ask him throughout the afternoon if he wants music and he’ll let me know by giving me the good ol’ thumbs-up.

Yesterday when the doctor arrived to check in on him he came up to Mark’s bed, said “Hello Mr. Silver, it’s Dr. S.” and Mark immediately put out his hand for a hand shake. The doctor was just as shocked as I was! Mark has not done this once since his stroke. I love little things like this. Mark is struggling hard to return to his old self, or maybe he’s creating a new self. I’ll be happy with either! 🙂

Update October 18 – Isolation

A new patient was admitted to the Enhanced Care Unit at the end of last week. I had a feeling when I saw her that she wasn’t going to stay for long. Turns out she has MRSA. (http://en.wikipedia.org/wiki/Methicillin-resistant_Staphylococcus_aureus) She was promptly removed from the room on Saturday. Mark’s room is now under complete isolation until Thursday. He and the other remaining patient both tested negative for MRSA from the first set of swabs. But they have to repeat the tests two more times just to be sure. This is a bacterium that no one wants to get. Please keep your fingers crossed that Mark and Teresa stay in the clear. We’ll know for sure on Thursday. In the meantime it’s better that no one visits. Just Teresa’s sister and I are in the room, with one nurse right now, and we’re getting to know each other pretty well. We watch out for each other and our loved ones. It’s a huge pain in the butt to wear a gown, latex gloves and mask all day long. Every time you leave the room you have to take it all off and put on clean items when you re-enter. We can’t bring food or drinks in. Mark still gives me a kiss on the mask, which is pretty cute. I tell him I’m smiling underneath and he smiles back. He’s continuing to improve with his hand-eye coordination on the right  side. He’s struggling to speak which he is unable to do with the trach tube in this throat. I keep telling him it’s only temporary and he’ll be talking soon enough. I can’t wait for that day! Please continue to send positive healing thoughts, prayers and good energy Mark’s way. Visualize him well, the way he used to be. He’s going to get there eventually! Thanks so much for all the wonderful responses to the blog so far. It means the world to us to know that we are not alone during this incredibly stressful and trying time.

Mary

Update from Mary

Dear Friends and Family,

I’ve been getting those emails again asking about Mark, so here is the latest.

Since my last update, from almost a month ago, Mark had a brief return visit to the Critical Care Unit. He had another bronchial infection. Plus another internal bleed. He stayed there for 5 days while they got his infections and bleeding under control and then he was sent back to ECU. His hemoglobin levels are fine now. It’s all a fine balancing act keeping him well!

These are complications from the stroke and from lying in bed for 10 weeks. His nurses get him up in his wheelchair on a daily basis. He sits up for about 2 – 4 hours every day. This is very good for his lungs. He hardly coughs at all when he is upright. When he is back in bed his cough sounds bad. The possibility of infection is a constant worry. He sputum remains positive for a bacteria called pseudomonas, but thankfully he is holding his own and is not infected with it. He is no longer on antibiotics. He has the tracheostomy in his throat still, so he is unable to speak. The tube was downgraded to a smaller size. He is slowly being weaned off the trach, but he still needs to have his airway protected from possible aspiration. The nurses suction the secretions from his throat using the trach, even though he has a good strong cough. Hopefully the stoma will be removed completely one day soon, and then Mark will be able to talk to us! (fingers crossed)

Back in the Enhanced Care Unit for almost a month now, Mark has been more responsive than ever, however he still is completely dependent on the nurses for every aspect of his care. It has been amazing to see his level of responsiveness and his coordination improve so much these last few weeks. When he is not sick, it is obvious that his brain is busy getting that rewiring done!

He now smiles when I say ‘hi’ to him. He always gives me a kiss. He squeezes our hands, blinks his eyes, nods his head, waves goodbye and gives hi-fives. He points a lot, and we’re trying to figure out what that means. I think he is curious about the other patients in his room. He plays ‘thumb-wars’ sometimes. I give him a little stress ball to play with, and he is getting good at tossing it back and forth with me. Two days ago, I gave him his comb and asked him to comb his own hair. He held the comb, lifted his arm and made a little motion near his head, which was a great achievement. Until yesterday, when we did it again, and this time he actually moved the comb right through his hair several times! I know these are little things, but I find them all very encouraging.

When he is sitting he is able to hold his head up without any support for almost an hour. This is a huge improvement! I’m so happy to see his muscle tone returning. The physiotherapists visit every day Monday to Friday to take him through his exercises. I do my best to exercise him when I’m there, especially his weakened left side. There have been little movements there, but mostly they are involuntary reflexes. His neurologist says his leg will recover before his arm does.

Mark’s doctor gave us permission 2 weeks ago to bring our dog Maple (a standard poodle) in for regular visits. He is considered part of Mark’s therapy! I’m pretty sure Maple was more excited than Mark the first time I brought him in. He hadn’t seen his daddy in 9 weeks! He went crazy licking Mark’s hands and feet. Mark didn’t have much of a reaction. I think he might have been tired from sitting up in his wheelchair. When I brought Maple in this past weekend, Mark was in bed, and he kept putting his hand out to touch Maple. I could tell he was happy his dog was there. He acknowledged it with a thumbs-up.

Mark has dropped quite a bit of weight. Most of it is from muscle loss. Yesterday was the first time that we saw his weight go up! He is weighed every Monday, and they do it when they put him in the Hoyer lift to get him in and out of bed. The dietitian agreed to increase his feed after a discussion with the doctor and myself. His kidneys are in fine condition and they don’t want to stress them by giving him too much protein. So hopefully he’ll at least maintain his current weight.

The current plan is to start the paperwork to have him transferred to a Complex Care Facility, as long as he stays healthy. He needs to have medical attention because of the feeding tube, and the trach. I’ve been told that it could take weeks, or months, until space is available for him. We don’t even have much of a say in the location because, most importantly, it will be the right place for Mark’s needs. How long it’s going to take for family to travel to see him is irrelevant. But it will be somewhere in this huge city.

It’s been an incredibly stressful and exhausting 10 weeks for me and our girls. I don’t know how we made it through those first few frightening days and weeks when I think about it now. It couldn’t have happened without family, that’s for sure. We are so lucky to have such a great big loving and supportive family, on both sides. Thank you family!

I’m so grateful to so many people who have helped us out in so many ways. From the gentle reminders to get the applications in for Mark’s disability insurance, to doing the research for me on how to get Guardianship of my own husband, (since we never got around to assigning Power of Attorney. Learn from our mistake – do that now if you haven’t already. The paperwork required for applying for Guardianship is extremely daunting to say the least. Not to mention the fact that Mark had to be ‘officially assessed’ as to his mental capacity.) Thank you!

I’m so grateful to everyone who has visited us, shared stories, shared a coffee, shared your time and brought much needed hugs. You’ve all helped us, my girls and I, to keep hanging in there. And you’ve brought positive, loving energy to Mark. Thank you!

I’m extremely grateful to Mark’s buddies who are continuing to rent out his equipment whenever they can, which keeps his business alive, and therefore gives us a little grocery and gas money. Thank you!

There are real angels in our world right now. You know who you are and I will never stop thanking you. I am completely overwhelmed and humbled to know how many people in the film community care about Mark and our family. Actually, the words ‘film family’ seem more fitting. Thank you!

I think we’re slowly getting used to this ‘new normal’. We don’t have much of a choice anyway. I believe the way to peace is through acceptance, gratitude and optimism. Mark is still here. He is fighting, he is recovering and I hope that one day, when he can really communicate with us, he will say that he is grateful too. Happy Thanksgiving and Shana Tova,

Mary       🙂

Update from Blake

Hi Everybody,

I went to see Mark today. He looked a lot better, a good visit. He was alert, his eyes looked clearer than I’ve seen him, and he held his head up high. I’m starting to feel better about it, he’s there, it’s just a matter of time. I asked him to give me a thumbs up or a thumbs down and he gave me a thumbs up and it didn’t look like a whole lot of effort!
I’m always looking for a little response, I want to ask him a question and receive an answer. A small test of his cognitive ability. For me it’s everything, I want to know where he’s at and I think he would agree and he would let me know where he’s at if he could.
He’s been sick. He’s had infections and he’s been fighting them and he’s always had that look of being deathly ill and fighting for your life. Since I’ve visited Mark, he’s had the look of being extremely sick and fighting for your life. Today he had the look of someone past that, in the clear. It was tough but it was good to see him. He had a bit of colour.
I won’t lie, it’s tough to see him every time, I’ve got to pump myself up a bit for it but he finally looked like he could come out of it.
His wife and kids were there with him as they always are when I visit. They are there every day. It’s pretty great, they’re loyal and strong for him. You can tell, he has left a gaping whole in their daily lives. He’s lucky that way.
Would you be that missed?
Many of you have sent gifts of cash and heartfelt wishes and I know the family truly appreciates it and they are overwhelmed by it. They aren’t even sure who everyone is yet they know that you are saving them for a while.
Thanks for that,

Blake