More disappointments!

Originally published on Multiply, November 29th, 2007

Well yesterday started out ok, I took my time at home getting ready, called Tony at 8:30 to tell him I'd be there as soon as I could and had my breakfast. The morning was fairly uneventful.

I had sent in the papers for the disability insurance, and the lady at the RBC Insurance had left messages last week about some misinformation and such (she just couldn't read the doctor's handwriting correctly) anyway, our contact at Tony's office called her and straightened her out and she called me back to tell me that it was approved and the payment would backtrack to when Tony was first admitted to the hospital, on November 3rd.  The payment is not as much as what we thought it would be, but at least it is NOT taxable, so that is a big plus. She does however need an additional form to be filled by the current doctor and I got it in the mail yesterday, so hopefully I will see the doctor today and get this done.

Around 11am, the nurses got Tony up in his chair, and he had lunch there and was there for another hour afterwards. then he got tired and they got him back to bed. The physio therapist never did show up yesterday - OR she did and we were both asleep, which is a possibility :) but I was keeping my ears opened, and every time I would hear something outside the room I would open my eyes to check it out, but I think that eventually I did pass out for maybe 1/2 hour (always a relief to catch any sleep at all).

The doctor passed by for a visit in the morning too, and she was discouraged herself. She can't get an answer from Julius Richardson, and says they have only 25 beds and that is for the ENTIRE city of Montreal and surrounding areas!!!! I was floored!!! I couldn't believe it would be THAT small. She said that another "heavy" patient has been waiting 2 months for his bed (By heavy they mean someone with a lot of problems) I sure hope that doesn't mean Tony will be there for another 2 months! Even an additional month would be hell, I can't even imagine him having to be there for Christmas!!!! And here we were on Monday thinking he's be there by tomorrow, guess that was a pipe dream!!! Another setback!!!

The speech therapist came yesterday, so that was a blessing, she recognized he was improving, but still needs to work a lot with improving the strength of his voice - the projection. But she thought he might be able to eat a little bit more solid food, nothing that needs a lot of chewing, but not quite so pureed.

She brought in a muffin and a piece of cheese, and he had no problem with that, so she said she would tell the nutritionist to make those changes and he should see it by supper - but it wasn't to be, he had the same pureed stuff and it was that dried up chicken again!!! Hopefully today will be better.

Later in the afternoon we got a visit from the Infectious Disease doctor, it's a replacement doctor because the one who follows the case is away for 2 weeks. She said she had been looking over the case and thought she would drop in for a visit. She mentioned that the Vankomicin he gets to treat the MRSA is not that effective, but the other drug he could have is not compatible with the Coumadin he takes, so we have to stick with that drug, I guess it just means it will take a lot longer to treat the MRSA.

So I guess that day wasn't exactly the perfect day, one disappointment after another, sure hope this day is a better one.

Pat you'll be happy to know I returned Anthony's call last night. He was telling me about the clothes pegs he was told to play with to get his hand moving when he was at Julius Richardson, Tony is not yet at that stage though, but hopefully he will be in the "near" future!!.

moscreations wrote on Dec 1, '07 Thanks Pat, things are looking up now, and I will blog about it next :) It was nice to speak to Anthony, and get his input. Once of these days these 2 will have to meet :) Thanks for the prayers we both need them :)

bluesie wrote on Nov 30, '07 Wow Mo, I sure hope that you have better news in the days that come. I do hope that he will be able to be moved soon. I know that Anthony loved that place ....that is what he said to me right after he got home. I am glad you got to talk to him. I hope it was helpful. He is really interested in Tony and how he is doing since he went through the same thing and today he is as bad as ever. Well you know you met him.....and that was aftter his stroke...so Your Tony will make it. It does take time but he will make it. I pray for you both but please get some rest before you both end up in the same bedroom ..not funny I know but you need to take care of yourself also hugs to you ..say hi to Tony and my prayers are with you both..... Pat

moscreations wrote on Nov 30, '07 Thank you Kanda. Last night I had a fairly good sleep compared to previous nights, I went to bed somewhere between 10 and 10:30 and woke up at 4am, so it's an improvement :) I do feel better, though a bit congested, I have been fighting a cold and hope I don't get it, otherwise I have to wear a mask on top of the gown and gloves!!!

kandaphati wrote on Nov 29, '07 The comments before mine have said what I wanted to say. Mo, keep warm and take good care of yourself. Your health is very important, as no one else can take good care of you. Tony is taken care of, though not as good as you have expected, but he is also deeply cared by you... So please make sure you always get enough rest ... so that you can look after Tony.... Sorry I could not help you, being too far away. Wish I were within driving distance from you. I still remember useful stuff I learned about OT when I was in college!!!!

moscreations wrote on Nov 29, '07 Thanks Bobbi Jo, today I took a bit of a break, I went in a bit later in the morning, and this afternoon I came home around 4:30 to feed my dog, as my gf had a dentist appointment and couldn't be home early as usual, so I had the chance to actually eat supper at home instead of the hospital and watch some tv while relaxing, and I almost fell asleep :) That's the thing that is the worst right now, I never had problems sleeping before but now it's a big problem. Thank you Barbara, I appreciate it, always He is speaking better everyday Suz, what he needs to work on, and I have problem doing it with him, is to get the strength back in his voice, his voice is weak, and he has problems with certain words, like those with V's, F's, and some others, so we need to work on those. The actual rehab is far off in the future, he's on a waiting list!! Prayers are good Mary Kaye and I always appreciate those. His MRSA is in his blood, he gets Vicomycin intravenously for it, which is not working all that well, but that's the only drug he can have, so this is going to take some time to treat that one :(

mkinwa wrote on Nov 29, '07 Wish I had something brilliant to suggest, or even to cheer you. Just know that I am keeping you both in prayer. I don't remember...where is the MRSA infection? Are they also treating it with wet to dry bandaging?

osuzana wrote on Nov 29, '07 Well, it seems bad to you but he is doing better. Is able to eat more. The better he does where he is the less time he will probably spend in rehab. And you are helping with all the stuff he needs to do. So go buy a live tree if he ends up there Christmas, a table top one and you can plant it later.

barbarab1313 wrote on Nov 29, '07 (((HUGS))) Just letting you know you and Tony are always in my thoughts and prayers.

drsouthpaw wrote on Nov 29, '07 MO, SOMETIMES IT SEEMS THAT WHAT IS HAPPENING TO US NOW IS HOW IT IS GOING TO BE FOREVER. PLEASE REMEMBER, THIS IS TEMPORARY. A LONG HAUL, BUT TEMPORARY. YOU NEED TO GET SOME REST SO YOU DON'T COME DOWN SICK, THEN YOU WILL BOTH BE "LAID UP." I CAN'T IMAGINE WHAT YOU HAVE BEEN THROUGH. I HAVE BEEN SPARED THAT TREMENDOUS BURDEN. BUT I CAN FEEL YOUR FRUSTRATION, YOUR FATIGUE, AND YOUR DISCOURAGEMENT. DOESN'T FEEL GOOD AT ALL. I AM PRAYING RIGHT NOW FOR YOU AND TONY. HANG IN THERE, MO.