of course that is the lowest end model i checked with my special needs moms and they said to get your dr to rx you one and insurance should pay for it (in Canada too)
working with your dr and a social worker, you should be able to get insurance to cover a lot of Ryan's nursing costs as well as equipment costs
Summer and Fig: Taking notes and I really appreciate your input and support.
TOday is going a little better. As you say - something has to give.
The hospital dr wants him out and phoned to ream me a bit. I held my ground and told him I also want him home but not if he's just going to deteriorate and go back in next month. Government supervisor (N) offered to run some interference with agency supervisor (C) - they often have to deal with one another although there's no love lost there. N is ALWAYS my best advocate. We agreed she should not talk about the bill but about the need to sit down with Josh and I to discuss the billing and not add more pressure to me. Apparently it went well.
Ryan is improving rapidly. Always does on antibiotics. He was happy today and had the biggest smiles for me. He was also pleased to see his workers.
So we have a Plan B, although I'm afraid to get too excited because we know Plan A went south fast. (& apparently once rejected - can't go there again). Anyway - there is an 18 bed recovery unit in hospital with a day program, outdoor area, large sunny lounge etc. It is a therapy centre and on top of having time for his skin issues to improve - he could have daily therapy there. This is something that would be a GIFT to him. (Meaning in that he would get therapy). Costwise - app $2,200 month. He would be there between 14 and 90 days. There is a bed available in a 3 bed room (not suitable) but a private room is coming available soon.
Ryan walked up until he was in Intensive Care 18 months ago. He has been getting stronger and was walking in the pool (although there will be no pool for a while). There he would have the extra "learning to walk" equipment and DAILY physic. As well - there's an awesome whirlpool tub that he would love (used to have one in his room in Niagara). That might help him too. The thought of "hospital" extended care did not sit well with me but this is actually a decent option.
And N is arranging for a free one month trial on a special mattress. No point in shelling out the $ if it's not perfect for him. I think that's a great idea.
So some progress is being made. Maybe a CRISIS is necessary to make the changes necessary.
I left Ryan with his "harem" today. 2 of his workers showed up because they missed him. And he had a really nice nurse. And he was one happy guy.
And Josh arrives tonight. And it's always easier when Josh is here.
This 18 bed recovery unit in hospital plan - with a private room sounds pretty ideal & that Ryan will enjoy it and have the time to restore himself. I love that he'll be getting the physical therapy he so needs to be able to walk again. And the jetted tub sounds wonderful and soothing.
And a free one month trial of the mattress is perfect! If it works ... fabulous ... you'll get it for him. And if not, nothing lost.
The workers sound pretty wonderful ... I love hearing that they miss him.
I am so glad to hear that Josh arrives tonight and that he will be with you when you sit down with the bulldog head of the agency.
Sometimes women like that won't dare pull out an attitude when a man is present ... sad to say ... but she may behave herself. And Josh is IMO the one who can say a lot of what's difficult for you to say.
He can be the one to insist/demand on BOUNDARIES for you. He can say how worn out you are and the HE will NOT allow this to continue and that everyone concerned must come up with a better way to communicate.
Josh can be your stalking horse. Let Josh be the one to say you are only available xyz times unless it's an emergency etc. He can act (as he actually is) like the concerned partner. Who not only has to put Ryan's needs on the table but YOURS also! He can make sure they understand that you count too.
It sounds as if there's a shift happening. And as I wrote before ... sometimes it just does have to reach the breaking point before change happens.
Seems that there's at least some daylight shining on the situation just from this AM. So fingers crossed that it all falls nicely into place.
Keep the faith b/c all of us are on your side and prayers are powerful!
I am going to check on that and your other suggestions and take that in tomorrow. So many things were happening and I never seem to have the same doc 2 days in a row
Summer: Missed your second post today. Thinking on the Bully situation. And thinking some more. I think I'll see if we get some answers at hospital today and go from there. Josh is a great advocate but he has seen her with her ruffled feathers before. He is helping me keep in mind what is best for Ryan and also for the agency. He is a businessman to the core - he is not AS stressed about the billing as me but helps me see clearer what is worth fighting for and what is not.
I just want to think about Ryan. I can handle the "wait list" as long as he is safe in hospital (debatable) but there are 4 possible places he can go - 2 not far for the workers and I and 2 that are more than an hour away. Apparently the wait list feeds into all 4. And the trouble is that Ryan has just been "added" to the wait list. So now - I guess we wait and see. I guess I have to know how many are on the list. And what I deem good might not be what is there for him when the time comes. Ahh... if life were simple...
So far no one has phoned me today. Hallelujah for that. I'm heading to the hospital and hopefully I missed the dr who will want to ream me again. I will read to Ryan until his worker gets there. He really likes his workers and they love him. This is one of the main reasons to keep the same staff and work things out with the Bulldog. Because it is what Ryan would want.
OK, we're getting through this. Not feeling like we're in a crisis. Taking care of things one step at a time.
1. Ryan's skin has healed dramatically. He was happy when I was at hospital and his PSW stayed with him for a few hours too
2. Supervisor of extended care replied to our plea (letter form) to streamline Ryan only into the rehab centre in the hospital in our town. (BONUS). This means it will be close enough for me to visit and for our PSWs to continue to visit him and even to take him out - now we have to wait and see when he can get in. Drs have to keep him in hospital as we are waiting for a bed
3. Conference call with "the bully" - Josh and I on one end, she and one of her henchmen on her end. She was not into negotiating. We did not make much progress. She did agree to pay the workers to work on Ryan's walking for 15 min per day at no extra charge to me. She would not concede on rate increase, travel cost etc. It would not have been beneficial to Ryan for us to continue to battle. She did put a price freeze on for 3 years.
4. Chuck sent me a text out of the blue asking to see Ryan on Father's Day. Ahem... So I texted back that he was in hospital. There were a few texts back and forth. He just asked to be kept informed of his progress. That's it.
Josh said to me - "Boy - you really do seem to get it from all sides".
Anyway - we went out for dinner then for a long ride in the boat. We stayed out till dark. We can never do that. I always have a curfew - have to be in the house by 8. We're going to stay out when we can - LOL - it will rarely happen.
We will get the mattress before he comes home. Sad to say he might be in hospital all summer - even for his birthday. But if he comes out stronger and more able and it will improve the quality of his life - this time will be well spent - a drop in the bucket of his lifetime.
I checked Ryan's liquid diet - Jevity. It has Vitamin D - sorry I forget the amount. Remember he is G Tube fed so he is supposed to be getting complete nutrition. He does get outside often as a rule too.
I'm so glad to hear that some things are getting resolved and that Josh is there with you to be your anchor and keep you focused on your ultimate goal ... which is as always is Ryan.
That you've gotten them to agree to place Ryan locally is wonderful and will make a world of difference for all concerned.
And, while it's not all you wanted ... a 3 year price guarantee/freeze is actually terrific and will give you some peace of mind that the rates won't be unknown which just adds ridiculous amounts of unnecessary stress to anyone's life.
As, for Chuck ... what's there to say. There's a special place in hell for people like him. Enjoy your trips and life Chuck ... but karma is a bi†ch.
What he really doesn't get is that while it's obviously a huge challenge - it's also a huge privilege to care for Ryan.
I will just never understand the astounding level of selfishness that these men exhibit. They are clearly very damaged people ... living in delusion and denial of who and what they are.
And while in some ways it will be sad that Ryan may not be home for the summer ... I think the Universe is giving you a much needed respite and some time to be free and have some fun that doesn't end @ 8 PM!
I truly believe that it's a answered prayer for both you and Ryan b/c he needs to restore his health and build back up to walking hopefully and you need the time to restore too.
So don't feel any guilt. Just enjoy your life and continue handling your life with your usual grace and strength.
i checked with my special needs moms and they said to get your dr to rx you one and insurance should pay for it (in Canada too)