New Conundrum

[Narrowminded]

Sharon - yes this will be an improvement. We will see how long OT sticks around. PT said she would be here for as along as we want her and is planning to help with the hoyer.

Speaking of the hoyer, it will be coming on Friday. I suspect I'll need to give Brian some xanax the first few lifts. However he's looking forward to trying his PWC again his summer. If we can get him I. The chair I think we will work on increasing his tolerance if we can, like 5 min a couple of times, then maybe 10 etc. that way by warm weather we might be able to get outside.

Urine issue still improving but not totally clear yet. Progress.

Hugs,

Sue

 

[Narrowminded]

Update time:

The PT was back today, as was the nurse. The urine sample turned out negative, so no antibiotics. Our Dr. told the nurse that he wants to leave the foley in for a few weeks then remove and do some straight caths to see what he's retaining. If it's more than 400, then the foley will stay. It's finally just about 100% clear.

They brought the hoyer today and what seems to be a really nice sling. The gentleman who brought it, is the same one that did Brian's PWC. Great guy. So he demo'd it by having me in the sling, and he told me what he was doing while getting me connected up. Brian could pretty much see, but then he rolled me over so Brian could see me in the sling. Then he had me use it on him. Brian would not try it as that was going to be the 3rd lift.

Brian wasn't himself today. Ended up needing Xanax twice today. He was having mini panic attacks. Told me he could not breathe. However, his O2 was 98 and his vent showed he was getting his correct tital volume. His pulse was up a bit, but normal for a panic attack. Not sure what's up. Weird.

Hugs,

Sue

 

[sunandsea]

Sue - Just wanted to say I'm thinking of you and all you are dealing with. It sounds like progress but you've been doing this for so. long. Your dedication and care are inspiring.
Hope the panic attacks diminish and Brian is having a good night. Hugs from afar.

 

[affected]

Oh Sue, do you think his panic could be connected to the lift?

 

[Narrowminded]

Tillie - It is very possible that it's the lift. However, it could just be the culmination of all the recent changes as well. A nurse to check on him, OT, PT, add in the lift coming in, even though we already had one. However, this lift is different - he didn't build it and he hasn't been out of his bed for a year and a half or so.

I know he did not really want a catheter either, however when it was inserted to check for residual, there was way to much to just take it out. WIth him laying there in bed all day he has nothing, other than TV or youtube to keep him distracted and I think obsesses about things. And, and this is huge, he HATES change. Never, ever did well with change.

He has stated clearly he doesn't want to go to the hospital, so if he blood count is down, it will just have to rebuild itself. I doubt highly they'd do a transfusion at home and he didn't want to go to see why he was bleeding. I need to respect that.

Maybe I should not have called about the bladder issue either, maybe I should have let it be, however I have a hard time believing a simple antibiotic, if that is what he needed would be a huge deal. He generally is ok with that, it's the bigger stuff he doesn't like.

The good news about the catheter and maybe the coconut oil, is his backside is much better. I'm wondering if the condom cath and/or urinal was leaking more than we realized, although the underpads did not seem to indicate that. But, retaining all that fluid is not good for the body and can be toxic.

We will see what today brings. It will bring an enema. He's really over due, but I was trying to avoid more trauma to that general area. It cannot not wait anymore though or we will have a new issue to deal with.

Hugs,

Sue

 

[affected]

Sue I think change would be pretty hard, I can't imagine being bed bound that long, let alone knowing that is going to change. As you say it has been a huge week for him really. Even though so many of these things have been complete positives, it is probably very scary.

At least you have meds that give him relief from the panic!

I hope the day brings him relief

 

[Aussiemndcarer]

Sue, I'm sending a virtual hug your way.all your visits from health professionals must exhaust you both.I just cannot comprehend how it feels for your Pals to be in bed for so long. I got to thinking about what little things may help him . ALS sucks because the mind is still so active ( mostly) .one thing that I regret doing is collating all our memories together in a published book so that Jim could put his own words in as well. So that he could help publish it too. We had such an amazing life before ALS. I was always too busy with care duties. As the primary carer there never seemed enough hours in the day. Wouldn't it be great if someone could help you with this? Perservere with the hoyer lift. It became our most valuable piece of equipment( apart from breathing machines!)

 

[Narrowminded]

Tillie - he's been doing ok today, even let up try the hoyer.

Well, we need a different sling. This was the split leg, and our guy brought a large as Brian is 6'2. Wanted to be sure that his head would definitely be supported. Well, he was falling through the hole. I mean really falling through. He is so floppy that his legs didn't really press against the sling. Was watching him slide right on down and when I tried to move the leg supports, he slid even more. Our guy will be bringing a different one on Monday. It was rather comical, as we quickly changed his sheets, (my daugher, my MIL and I), when we started his bum was just barely touching, bed down as low as it could go and hoyer up as high, by the time we were done (not even minutes) I had to try and lift him so we could finish. He fell through like 6" or so.

Hugs,

Sue

 

[affected]

I hope he was ok about it Sue because I confess I had to laugh at the image of it all as I read!

 

[Narrowminded]

Aussie - we were typing at the same time. Yes, I have been exhausted this week with all the ins and outs of new people. It will take a while to get that into a routine. Yep, he's been in bed that long. Funny though when I mentioned to him about another PAL from another site who has been vented for 18 years and counting, I asked if he could imagine another 12 years like this and he said yes. Glad he's up for ride, not so sure I am. As we know, everyone is different. Not sure he'll still be here in 12 years, esp if he's refusing a hospital trip.

Tillie - he wasn't laughing, but it was funny. Of course I was a good wife, and I was all business about it and didn't laugh out loud

Hugs,

Sue

 

[affected]

Oh definitely one of those things that is far funnier later in the telling, and not at all funny for the person experiencing it! (meaning your Brian :lol: )

 

[Narrowminded]

Tillie - Brian is able to laugh about it now.

We got a different sling today. It's a Medium Slim. When our gentleman was here with it, we tried it on Brian and it worked so much better. As soon as the wheelchair comes back, we will try transferring him. Only let him there a few minutes as he hasn't been out of bed, but hope to up his endurance for it if possible. Only time will tell.

And I keep forgetting to update about the coconut oil. I'm still just using coconut oil and it's doing amazing. However, I do think that having the internal foley is helping as well. I can't help but thing that between the condom cath and the urinal, there were undectable leaks that we were missing as well. Either way, his back side is almost completely healed.

hugs,

Sue

 

[affected]

So glad about his bottom - I agree it could well be a combination, but the coconut oil sounds like the go for sure.

Yep, do your practice slinging him up, and you can even try popping a bedpan under him once he is a little confident.

The sling is easy enough to put on in bed? So glad you are making forward moving steps every week now xx

 

[Narrowminded]

Tillie - I need to practice trying to get it down from the top. Just went with the roll yesterday since there were 2 of us. However, i'd really prefer not to roll him. I will see how it goes. Didn't play with it today. Lots of suctioning.

Hugs,

Sue