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#2251568 06/06/12 12:06 AM
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This would be temp. Barb? Could you try it and see how Ryan does there, you know him well, being mama, you could see if its something that would work? Would you be able to let him go on a wait it out and see type basis?

I agree, you will make the right decision for you two. Your smart and loving and thats the two things that are needed.


Be Happy for this Moment,
This Moment is your Life


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Hey Gineen,

Yep - I went to visit there tonight and I really like it! I'm actually shocked but it is really really nice. Reminds me of one of my timeshares at Disney - very posh!

They have an RN on staff and she actually knew me - had been to our house for an agency visit (she works for a different agency). She said she would put in a good word for Ryan and that she feels he would do well there. I like her!

There was a super-aweseome deep bathtub with a lift - Ry has a wheel-in shower at home but a tub would be better! He would love it - it has jets and all. There are many activities, they have PSWs on staff too and I could send in my girls for a few hours every day if I choose.

He has to be assessed by the home staff to see if they feel they can handle him but he could be moved soon. I will agree to it.

And my agency is after me once again - asking about how I want to be billed as of June 15! JEEZ - give me some space!

Anyway - a plan is formulating.

Barb

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Hi Karen!

Yes - it would be temporary. There is a special, lower rate for him for the first 6 to 8 weeks but it would go up after that. I am thinking we might do it for about a month - or till we really get his skin issues under control.

If Ry did not like it - home is always an option. A similar setup has been suggested for me to consider many times when I am away but I have shied away from it. If this works out during this trial - maybe that would be a good consideration for when Josh and I are on vacation. But only if Ryan likes it.

So - while he is in there - we could negotiate with the agency and choose a new doctor. He would be safe in the meantime.

Now I'm hoping this will work out.

Barb

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Well, it's not going to work. Apparently Ryan is "too handicapped" for their home. That is one tough blow to take. I cry just writing it.

So we have no plan. He is still in hospital in isolation. Can't stay in hospital. Can't go into hospice and can't come home. There cannot be much anything more frustrating than this. It is not the life I signed up for.

I'm sorry I wasted my time going there last night. It was about the last thing I had time or energy for.

I am discouraged.

Barb

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AWwwwww, honey - I'm sorry.

They will just have to keep him in hospital until an alternative is worked out.

Sorry so much weight is on your shoulders - you're a good mom. The best.

#2251887 06/07/12 01:13 AM
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I know they will probably have to keep him in hospital until they find a place but they've been threatening to send him home since day 1. Yet they have not resolved his skin issues/breakdown. His current infections are healing quickly but he is now on antibiotic #8 in 5 months.

The main issue is the skin breakdowns and recurring infections (daily when he is not on antibiotics) and he needs to be turned throughout the night. How a nursing facility cannot handle that is beyond me but he is complicated. G-tube fed (that was an issue) MRSA (another issue) although he has swabbed negative the last 4 swabs.

Ryan was walking 2 years ago - now they don't even work on it.

I am sending his PSWs in to the hospital for a few hours tomm at my expense. I will go in the morning and see what else we can work out.

I'm considering just bringing him home and making it work. Josh says he will help me on the weekends and somehow I guess I'll find the strength - I had been trying to do it for the past month although it is not easy and I worry that I'm not doing it good enough.

Barb

#2251896 06/07/12 02:10 AM
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I wonder how much one of the mattresses is - it had been mentioned to me by the agency supervisor.

yes - I bought him a brand new power hospital bed when we moved here last year. Power recliner. Power wheelchair. Ceiling track lift. Brand new fully tiled ceramic bathroom with wheel in shower. Lift over the boat. Lift over the hot tub. Nearly BROKE me but I wanted the best for him.

And his dad knows none of it. He will call in a week or 2 to demand to have him brought to him. And that's it...

Barb

#2251980 06/07/12 12:08 PM
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Thanks so much Gineen!

I'm still torn about what to do about the agency. I agreed to let one of the girls go in this afternoon to hospital - I will pay for 4 hours and travel. While he is in hospital I can do research and hopefully try to negotiate my contract. Our government assigned supervisor has suggested a social worker who could help act as a negotiator. I think this could be quite helpful although the woman from Hell supervisor of our agency would definitely not like this.

Not sure what I can do. Both with his placement and with the agency. Every day in the hospital - I know my time is limited. They keep telling me he can't be in an acute care bed.

UGH

Barb

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Barb,

I'm just so overwhelmed for you just reading about all you're having to deal with and the limited options seemingly available to you.

Brings back memories of my precious Zachary. I was so worn out towards the end of his life ... and you've dealt with it twice as long as I did.

I was so excited about the nursing home possibility ... is there any chance you could speak to anyone else to intervene? I agree it's hard to believe that they've never dealt with Ryan's issues before??

Might they consider taking Ryan in on a trial-run type of thing? Even for a week? It's possible they would find they could handle him. I don't know if anyone knows someone there who might be your advocate ... but that nursing home sounds perfect.


I do think a mediator is absolutely essential for you! The agency head is a bully and you're too overwhelmed right now to be on your game with her. You need help and a respite from her constant nagging.

You are so blessed to have Josh ... he is a literal godsend...

I don't know much about the pressure relieving air mattress you're investigating ... but from since both the agency and Gabby mentioned it ... I take that as a sign that you should probably find a way to get Ryan one. Expensive or not ... this may be one of the best things you can do for him right now.

I don't know why all this has befallen you suddenly ... but it's reaching a crisis point ... which always means things WILL start improving b/c SOMETHING is going to change.

Please know you're in my thoughts and prayers.


Summer

SUMMER #2252037 06/07/12 02:28 PM
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http://www.spinlife.com/critpath/match.cfm?categoryID=473
barb...I m not sure if it will let this post as it is an email address but it is a link to one of the pressure relieving air mattresses on clearance for $95

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