So sorry that I haven't blogged in so long, I get so tired when I get home, I crash in the living room, turn on the tv, watch something for a while and inevitably fall asleep and wake up anywhere around midnight to 2am and head off to bed.
In the morning I try to get through the mail and never seem to have enough time to get a blog going, so I'm trying to do this before I get ready to go out again to the rehab and be with Tony for the afternoon and evening.
Thanks to those who have inquired privately if everything was ok, since I hadn't blogged since Dec. 26th :) - first of all on January 1st, the family gathered again at the rehab to celebrate the New Year, in the pics from that day, Tony didn't seem as happy, but he was very happy to have everyone there. But at the same time it is tiring for him, specially that this time everything for started a bit late, so by 8pm he was really drained.
A few other families also had celebrations in the cafeteria, but they had ordered or picked up food at a restaurant (one was Chinese food and the other BBQ chicken from St. Hubert BBQ).
On December 31st, I saw the physio-therapist as she was going to the nurses desk and asked her what she thought of the progress Tony was making and how much longer she thought he would be there. She said he was improving a little, but didn't think that the arm would ever come back, since then, he has made a tiny bit of improvement in that area and I hope that she was wrong in that assessment. She also said that because of the holidays where there was about 1 week of treatment missing because the department was closed and also where he had missed several treatments when he was on his IV that they would keep him an additional 5-6 weeks from that date.
The aim is of course to have him walking, because our house is definitely not wheelchair friendly, so he really needs to be able to get around either with a cane or a walker and be able to take the stairs, so that is what the physio-therapist is working on, while the occupational therapist works on getting his arm moving. Only slight improvement so far with that. Keep the prayers coming :)
Other than that, we have met with the psychologist, Tony met her on his own the first time and suggested that I be there for other meetings and we both met with her on Dec. 31st, we were to meet her this past Monday, but it had to be rescheduled for today, as there was a conflict with the OT and a meeting everyone had to go to at 3pm. But on the meeting I was at earlier, she asked Tony what he would do if I were to call him one day and say that I was tired and couldn't go in that day, his response was that he would understand and accept it.
Well, I put that though to the test last week, when his brother Jim called me one day to tell me to rest and take it easy he would take over for the day, going in the afternoon and staying until 7pm. I was so happy to be able to sleep and rest, so I called Tony to let him know. Well you should have heard the disappointment in his voice when he said "oh no, I was so looking forward to seeing you", my heart just sank, then he rallied and said it was ok, he understood, (of course all the while I knew it just wasn't true) we said our goodbyes and I love you and hung up. He called back a few minutes later to say, it was ok, to stay home and rest, he was a big boy etc etc. I didn't say anything, but I decided that I would go in a little bit later and surprise him, but I did call Jim to let him know, and warning him not to say anything.
I got there around 3pm, Tony should have been in his room, but as it often happens, there was another scheduling problem and his OT had been delayed so he was still there, Jim was watching the therapy, so I came in and surprised Tony. He also had another visitor at the same time, someone from his office - it never rains it pours. He rarely gets any other visitors, other than me, and when they show up, it's always everybody at the same time or at the wrong time.......lol. Anyway, Tony was really pleased to see me.
Since Jim was still staying until 7pm, I brought in supper for the both of us and we ate in the room after Tony was finished his dinner.
He gets really bored when there is nothing going on at the rehab, like on those days during the Christmas break and on week-ends when there is no therapy, and a lot of patients when they are able, go home on week-ends, so it's very boring for him, so I ordered him a Dell laptop, which I should be receiving either Friday or Monday. I'm hoping that with that, he will be able to occupy himself when I'm not around.
He doesn't seem to be able to focus on anything for long. I tried bringing crossword puzzles and other such things, but he only spends a few minutes on it and can't continue or won't because it's too hard for him to concentrate. We tried a couple of times to play cribbage, but only got halfway in the game when he lost interest. I bring in the paper on week-end and he has no interest in reading it. He never was a reader, but he did read magazines and the newspaper, but now it just doesn't interest him. So I'm at a loss at what to find for him to keep him interested and to relieve his boredom, because I can't be there all the time, so he needs to find something. I hope the computer will do the trick. There is a desktop computer there, but there is no internet connection, he still won't have it on his laptop, but hopefully there will be something else on it will keep his interest.
Oh one thing I forgot to mention is that on Christmas day, it was the last day he was on the Vankomycin drip - YEAHHHHHHHHHHHh and also the Rifampin.Finally he was free of that IV, but he still has the PICC line and we're still waiting to hear when they will remove that as it's a real pain to have these 2 lines dangling on his arm at all times and they have to keep flushing the lines to make sure they are functioning - just in case they would need them. But at least he is now free in the morning to get therapy scheduled, as it was always a conflict before.
They are continuing to test him to make sure that the MRSA comes up negative, and they need "so many" not sure how many, negatives before they remove the warning about it. But for all intents and purposes he is MRSA free, it's just that they have to follow a certain protocol at the rehab about this.
I guess that is about it for now, I hope I haven't forgotten any other news, but I think you have the main things for now. So hopefully we will see continued improvements so that he can come home soon - I just need to know just what needs to be done at home WHEN he does come home. Probably have to install additional railings to the stairs that lead to the bedrooms upstairs and fittings in all bathrooms. More things to check with them for that, and I think that our local CLSC will help with that is needed, so I'm told anyway, so that is something else to be investigated.
I wish you all a great day or evening, depending where you are and thank you all for your support and prayers, we still need them. As a matter of fact, I printed out a poster online the other day to bring to Tony, which was the Serenity Prayer. It appears that it was of great comfort to him. He was even looking forward to going to a service at the rehab on Sunday, and when we tried to do that, we couldn't find anywhere that had it, even though it was posted on a board that they were supposed to have it in the lounge, there wasn't any, he was quite disappointed. We'll have to see about that this week.
Here is the prayer:
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
moscreations wrote on Jan 11, '08
Thanks Jules. We are actually having a family meeting next week, that is me, Tony, the physio-therapist, occupational therapist, speech therapist and the psychologist. I asked about what would be required when he comes home and they suggested we have this meeting as we can't wait for the last minute. No I'm having problems with my left knee, hope it will settle itself soon, yesterday I had a lot of problems walking!
Thanks so much for the prayers, it means a lot to me and Tony. Hugs, Mo
hooverchild wrote on Jan 10, '08
Thank you so much for the update, Mo. Yes...the changes will be coming. Can they do a walk through in your home and assess what needs to be added or changed? So far, it sounds like they are the only ones who know what changes Tony will need. I am still praying that he will be able to go up and down the stairs. But one day at a time, hun. I hold you in my prayers too, Monique, and like you, I pray that the Doctor is wrong about Tony's arm, and that he continues to make some progress with it. Do rest when you can, hun. You really need it, and health wise you need to take a day off, too. Thank you again, hun, for the update. Big hugs for you, sweetie.
moscreations wrote on Jan 9, '08
I don't know Misty. The ground floor is not very roomy, yes we have a dining room, but not a kitchen where we can sit and eat, the only place to eat is in the dining room. Yes we have a powder room on the ground floor, so that is not a problem, there is no bath of course, but at least there is a toilet and a sink. I don't know if he will require a hospital bed at this point. The only place we'd be able to put it is in the living room and that really would cramp out the room as it's not THAT large either. The kitchen is a galley type kitchen, so only counter spaces and appliances and sink on both sides, well the appliances are all on the same side, but you know what I mean. There is a laundry room on the other side of it. So, we're kind of restricted if he can't make it up the stairs. But I plan on having an additional railing installed in the stairs, the stairs that lead to the basement will not be available to him as they are wrought iron spiraled stairs. We would have to have that changed, don't know how much it would cost - lots to do and think about!!
mistyshadows2u wrote on Jan 9, '08
MO...I can't even begin to think how you are going to manage Tony when he gets home. Especially the stairs. Is there a dining room?? Could you convert that over to a bedroom? Do you have a mainfloor washroom??? Maybe having him on the mainfloor only would be best if you could swing it. What if Tony has a bad day and can't manage the stairs? Geeesh after the fall you took I'd hate to see you both tumble. Just a coulple thoughts for ya to think on. You'd better get plenty of rest while you can. What about homecare for him?
moscreations wrote on Jan 9, '08
You're welcome Barbara, it had been too long :)
it is very hard for him to completely understand that I can't be there all the time, but I try to be there as much as I can, but I get so tired, in the morning I sleep for most of the time, in between watching the soaps I recorded, but I keep having to rewind and watch what I missed.....lol. Supposed to be getting the computer tomorrow - anytime between 9am and 5pm!!! Obviously I won't be here in the afternoon,so I hope they deliver it in the morning.
Yeah I was tired Kanda, but felt I had to post something it had been too long. I love the Serenity Prayer, it's a great prayer that applies to everyone, no matter what religion.
PT do concentrate on the leg and OT on the arm and hopefully both will get working fully one day.
We will be having a family meeting (family being me and Tony) with all therapist and psychologist next week. To evaluate what will be required once he goes home, wheelchair? Fittings for bathrooms, railings etc etc Can't wait until the last minute to get this done. A wheelchair will have to be ordered, made-to-measure, and it takes 2 months to get that. He will need it when we go out shopping, restaurants etc too tiring to go around with a cane or whatever level he will be at, at that point, I just pray that he doesn't have to be in that wheelchair for the rest of his life, because I know he will be miserable if he has to use that all the time - though not at home, we just aren't wheelchair friendly at home.
kandaphati wrote on Jan 9, '08, edited on Jan 9, '08
You must have been tired after blogging! The poem is great. So uplifting. I will print it out and put it to my wall.
It is not surprising that Tony's concentration is not as good as before. He needs time! It is not surprising that PT said nothing much about arms and hands. PTs usually know better about legs! OTs will bring out the best functioning level of the arms and fingers and eye-hand coordination. Jeez I really wish I were with you...
Take care, rest well, and keep yourself very warm, Mo. You've got lots to do but make sure you get rest first.
barbarab1313 wrote on Jan 9, '08
Thanks Mo for the update. Things to be going slowly but at least they seem to be on the right track. I realize that it is hard for Tony but I also know that it must be very difficult for you too, to see the one you love not able to do the things he once did. He is very fortunate to have you in his life. I am sure you are the one of the bright spots in his day.
Just make sure you take time for you and always you are both in my prayers.
(((HUGS)))
No comments:
Post a Comment