Tuesday, December 17, 2024

Sorry It’s been awhile since I posted an update. Up until now there hasn’t been any significant changes.

In the beginning of Oct we did our last trip to Cincinnati. After that trip Mike’s viral load number was down to 5010. At that point they decided to hold off on any subsequent treatments with the hope that his immune system would finish the job. He has gotten another Lumber puncture recently to see what the current viral load is, but we are still waiting for those results. If they start to rise again we might have to go back to Cincinnati for another treatment or two.

Mike’s been in physio twice per week for the last couple months. And while he is getting stronger, there hasn’t been any improvements with healing of the nerve coatings in his brain, other than the inflammation going down, which has helped a little with some of his symptoms.

It’s still been a bit of a rollercoaster. He goes through periods where he seems to be improving and then something happens that sets him back. He had a bad reaction to a new medication a couple months ago which made his mouth really swollen and both swallowing and the little bit of speaking he could do were affected. About 6 weeks ago he got aspiration pneumonia which made him really weak for a bit but he seems to be over that now. He was having troubles with overactive salivary glands so they gave him Botox injections in his glands about a month ago. He is currently having issues with swallowing again (which we are assuming is from the Botox as they did say that was a rare side effect). They are recommending he get a feeding tube placed directly into his stomach to minimize the risk of getting aspiration pneumonia again.

And about as month ago we looked into getting him into St Michael’s Health Center in Lethbridge for their PARP program. It’s an intensive rehabilitation program that includes occupational and physio therapy as well as speech and swallowing. He was accepted into the program and we were just waiting for a spot to open up for him. We’ve heard great things about this program and Mike’s been really looking forward to going and hopefully getting the help he needs to start real recovery. Yesterday they called that they had a bed for him open up and we could bring him in today. So that was a little shocking as he will be admitted for likely a few months but we both think this will be really good for him. He is a little nervous, but he’s so tired of just sitting around and hopefully this will help get him up and moving again.

Saturday, February 8, 2025

Mike’s been at Saint Michael’s for just over 7 weeks now. The first couple of weeks were pretty slow physio wise, he had some orientation days and then got the feeding tube put in his stomach and then there were all the stats around Christmas. But the past 5 weeks he’s been going hard. Everyday he has 5 appointments – physio, OT, rec therapy, speech/swallowing and exercise (usually the bike). The therapists have been saying how they’ve been noticing improvements but up until this week we haven’t really seen that much. We are now starting to see some progress. It’s been slow but he is getting a little stronger and can do a little more. And he can say more sounds. Still a long ways to go but we did find this week encouraging. He also has a tentative discharge date at the end of March so hopefully we see a lot more progress in the next 7 weeks.

He’s usually in good spirits. He’s been getting lots of company, which he needs, so that’s been really good. He gets out often for walks which he loves.

Thanks again to everyone who’s been looking out for us all. All the visits and meals and snow shovelling and the countless ways so many people have been so helpful. We appreciate it all! ❤️

Tuesday, March 18, 2025

It seems we’ve come to a bit of a standstill with Mikes progress. Actually since I wrote the last post his speech is a little worse. And whether that’s from the different medications they are trying to get his salivary glands under control I’m not sure. Also since the last update he’s been having more trouble controlling his right leg while using the standing walker. He is getting discharged from St. Mike’s next week. They say they don’t think they can help him improve any more than he has, which really has only been a little strength. He still can’t talk well, can’t eat or swallow well (he has a tube in his stomach for “eating”). He can’t walk or use his right side and still has limited use of his left side. We will have home care come in every day as it’s getting harder for me to manage his care on my own as well as everthing else. He will try to do his physio daily to keep up his strength and hope for some healing in his brain so that he can gain some function. He still understands everything and still looks well and is otherwise healthy. He has been in good spirits but lately is struggling with that as we’ve had to realize that we might just have to adjust to living like this for awhile.