Summer: It is a silver lining the way things are turning out. They NEVER let you choose one of the continuing care locations - it is not part of the process. But the discharge planner and government supervisor went to bat for me and although I did not expect special consideration (trust me - it NEVER happens) - it was accepted. There truly are a few angels around and they really gave it their best shot. I'm just pleased that the docs will give me a break for a bit and hold on to Ry while we get the bed situation sorted out.
& I've been doing my homework. I have heard amazing things about this rehab and the therapists who work there. If Ryan is accepted as a recovering patient for his illness - it will cost me about 2G a month. But if they can convince them he is there primarily for physiotherapy - there is no fee. That would make a huge difference.
Now that I've had some time to think about it - I wonder why Niagara did not refer him for intense therapy following his serious bout with pneumonia and stay in ICU 18 months ago. He was sent home with severe breathing problems and I remember sleeping in his room for a month. I was terrified and kept one hand on him all night to be sure he was breathing and had a flashlight and woke every 20 min or so to check him. Unbelievable he came home like that and no one seemed to notice that he was not walking.
I have been thinking about it. They told me he could be taken out of hospital for outings, home visits and even to his day program. So Josh and I figure we can take him out for boat rides which he will love. A bit more complicated than when he is here but still - something good for him.
Interesting - Chuck did not even ask me which hospital he is in. He did not ask how long he might be in. He asked me if it was serious and if I would keep him posted. And that was it. He did not sound as though he would visit. He had asked to see him but expected us to bring him about 90 min away where he has been seeing him at a mall.
Josh cares about Ryan. He worries about him and, like me, often loses sleep over it. He has stayed with him many times at night so I can go to a girl weekend or to Florida. He even took him to hospital on Mother's Day when I was out of town and his IV started leaking. He researches helpful info for him online. And he quit work early today to help me negotiate with the Bully. He always attends case conferences about Ryan with me and obviously cares about him.
Anyway - let's all keep praying that Ryan is accepted into the continuing care bed soon. And that the therapy helps and he grows strong. He is still a young man and he deserves a good life like the rest of us.
Remember he is G Tube fed so he is supposed to be getting complete nutrition. He does get outside often as a rule too.
AThe big experts in the vitamin D field want to make 2,000 IU/d the new RDA. Jevity appears to have 400 IU - the current (inadequate) standard.
When I have patients with low vit D (common even here in sunny San Diego) it usually takes about 5,000 IU/d for several months to bring them up to optimal levels.
At your latitude, you can't make vitamin D in the winter - the sun is too weak.
Vitamin D deficiency causes muscle weakness. Giving vitamin D to elderly patients in nursing homes reduced falls by 50% in four months. Ask them to check a blood level.
Also - are there any alternatives to the standard tube feedings? Can regular foods ever be blended and put in the tube? It's hard to imagine how one can be truly healthy on a diet where the first few ingredients are corn, corn, soy, and corn.
Yes, I read that it was over 400 IU in Jevity 1.5 but did not know what the RDA was. I will definitely mention this to them.
Years ago we used to blend and use this through the tube but it made for much difficulty in running it and also in keeping the tubing clean. I can ask about this, though, too. Sometimes it is easier to make changes when you're in hospital then implement them when you come home.
I read on a website about using a Vitamix blender to do that - they are very powerful blenders which could reduce most anything to a thin soup. And they mentioned getting one free through some medical needs program that Vitamix had? (Otherwise they cost a few hundred bucks I think).
I just think that improving his nutrition might help his skin problems and his strength.
Hi Barb. Heard through the "grapevine" about Ryan. I am so sorry to hear about the problem. So overwhelming really, but you're strong and get through it every time.
I just wondered here, maybe it's a bit off topic. But did you ever think Chuckie just has a personality disorder? I've come to that conclusion with mine. I just don't even worry about him any more when stuff comes up -- so much that I think I figured out in hindsight just makes me less and less concerned about keeping him in the loop about anything and even caring about what he thinks or wants.
Of course, easy for me to say. I don't have a disabled adult child to worry about. But the whole thing became crystal clear for me this past Christmas when my mom passed. Ex just didn't care, didn't say anything--even to the kids, nada. But he raised a ballyhoo when his dad and grandparents passed about what I did or did not do. I realized then it was just about him and what he wanted and his need for attention. So I let it go. His mom came to my mom's funeral though--very sweet and lovely lady. I have a hunch his family knows his problems, even the kids. One of them told me recently, "asking dad to do anything or getting him to call or communicate is like poking the sloth." This is the guy too who, when one of the kids decided to get married, reamed her out very meanly when she called to tell him and then had to act like the proud daddy and get all the attention on him at her wedding.
I really have come to believe my ex is just a self-centered, piggish, attention wh()ring fool. If he can't make it about him, then he won't bother. Can't do anything about it if he doesn't want to be a normal human being.
Hope you're getting some rest and that Ryan is doing better. I always am amazed at how well you do deal with all of this. Keep putting that positive effort on you and your family. Don't give Chuckie another braincell's worth of space in your head.
I definitely think Chuck has a personality disorder. I was aware of his "problems" early on in our marriage - a ton of stuff. Somehow when you're in it - you can rationalize a lot of it. I was definitely trying to make it work and afraid of our marriage falling apart. But there were many, many things going on. Possible previous affairs (though I never really believed it), more than one suicide attempt, more than one breakdown, several threatening episodes (one which involved police), more than one arrest, a DUI (there should have been several), careless charge, some blackouts, and so much unexplained erratic behaviour. Looking back - I don't know how I did it. I know I "stuffed" a lot of it away and tried to reason it. I also felt I stayed with him for the kids. Big mistake!
Ashley posted something on FB today about looking for a new job so I PMd her and reminded her it wasn't a good thing to do that - her boss might not like it. She told me that he knew and that he supported her getting a job in her field. She's never really had that much respect for him but today she said "Yeah, he's more of a father to me than my MIA Dad".
I told her that I had heard from her dad and he was asking about Ryan but that I found it strange he never even asked what hospital he was in. She said that she just learned he lost his licence again and that something weird was going on. Brandon was going to phone him today. I asked her if he had not been able to drive since he got sick in Feb and she told me NO - that he found out on May 8 that he could not drive but she did not know why.
So - the good news is that he is more than 3 hours away with no licence. But I'm sad for my kids. Sad that I married a dickhead and that he is their father.
Ryan has been in great spirits. I'm sure it must feel 100% better not to have the skin issues he was dealing with. They have started to let him out of his room a bit and I have been paying for his PSWs to go in for 4 hours a day to supplement the time that I'm there.
So this week is starting better than last week. We shall see how it goes.
