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#2242442 05/03/12 01:10 AM
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Thanks Gineen,

She is one of the most difficult people I have ever encountered. As Josh says of her - "she is very draining". Trouble is - she does not see herself as we see her (and a host of others). She thinks she is uber efficient, caring and provides the very best. I have to admit that she really does do a good job but she is extremely demanding. She seems to forget that what I really need from the agency is a stress break.

I like the girls - they really do care about Ryan. The hospital is new to me but so far everyone seems to be nice. This MSRA is quite challenging but at least he is not as extremely ill as the last time he was admitted 18 months ago.

We will get through this week and hope things are much better a week from now.

Barb

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Today will be a better day.

Found out that my ex does not leave for Russia for another 2 weeks. Ashley told him Ryan is in hospital but I have not heard from him.

Local supervisor from government agency who provides us with some hours for Ryan's care (most is paid by me) had a nice talk and supports me 100%. She has heard the other supervisor give me a hard time repeatedly and she is offering me some other ideas. It helps...

I am off to the hospital soon. (have a couple of workers here this morning for a bit longer and can't leave). I spoke to the hospital nurse supervisor today (she asked to speak to me when I called in). Ryan is awake, alert and seems happy. (relief!). He had several skin lesions when he went into hospital but almost all have cleared! (ok -that's a miracle - thank you for your prayers). She also made a point of telling me that Ryan's overall condition is absolutely amazing considering his age and his disabilities. Obviously a result of his care. This is a different nurse than the one who spoke to me the other night. Once again - it reminds me that I am doing well for him and should continue on the same course.

Josh is coming up tonight. I feel better when he is here. We are going to go to dinner and a movie tomorrow. We never get to go. It just means such a struggle to get a babysitter that it's often not worth it.

I'm going to look into getting a nanny more seriously. I have a plan forming. I would still need some nursing help but not as much as I have now. It would be more cost efficient and allow us to go out in the evenings more often. It might be a long time coming - I heard that the wait is app 5 to 6 months. But that could make life easier.

Can't wait to see him and hope that he is awake today.

Barb

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I am so glad to hear Ryan is doing so much better!!!!!! You're a fabulous mom and like the nurse says, Ryan's condition proves it!

Have fun tomorrow night!


T19 M15 S19 XH47 M43
bomb12/4/07
PA5/07
S12/26/07
D final 11/17/08
Back together with no defined R 05/2010
confused....to say the least!!!

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Thanks Mishka!!!

Well - it appears tomorrow night won't happen. Ryan is going to be released tomorrow. Typical. He is not all better but they want the bed. So they always say "we don't want him to catch something else". Ahem - he is in isolation. Well - whatever - it CAN happen - I know.

So they are going to send in an IV nurse every day so he can continue on IV. OK - he will be happier at home.

So I called Josh to tell him before he left work and drove up. Just in case he wanted to meet tonight and go out. As ever - he just took it all in stride. No worries -we can buy a new movie, he said. And he will cook for me. Always calm. Always caring. I do have to say - all the workers in the house like him. He is nice to them. I even found a note they left him, thanking him for some help he gave them when they had a problem. And RYAN is NOT his son!!!

Wii - send up SDA lady. Then I can have a babysitter and go out. PLEASE!

Barb

#2243213 05/06/12 12:25 PM
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Thanks Gineen,

He got out of hospital Friday with an IV pump for home. Way too soon. That night we postponed dinner until the IV nurse came and started pump. Finally sat down to some wonderful tenderloin (thank you Josh) and a terrific bottle of wine. I had a glass and a half and still had a couple of bites to go when I learned that the IV was leaking all over Ryan and the meds were lost. The IV nurse who was on call said she would not come. I begged her. We were to go back to hospital. I felt I should not drive. So Josh had to drive and Ry's PSW came with us (he is another story). Anyway - it just had come unconnected not dislodged - a simple fix that the nurse could have done at home. Instead we all had a rough evening.

But today the sun is shining. Our sweet PSW is here. The IV nurse comes once a day and Ryan will get outside for a short walk. He is in good spirits. And so am I.

And as I wrote on Wii's thread - my other son (who was hating his job) just got a better job. He will be starting soon. It is in his line of work - much better pay. He is one happy camper.

Barb

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It sounds like things are on the upswing! So glad!


T19 M15 S19 XH47 M43
bomb12/4/07
PA5/07
S12/26/07
D final 11/17/08
Back together with no defined R 05/2010
confused....to say the least!!!

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Posts: 2,710
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Thanks! The IV is once again apart and we've been waiting for the nurse to call back for 2 hours. I hope this won't mean another trip to the hospital. It is getting very draining (emotionally and physically in more ways than one).

UGH

Barb

#2243261 05/06/12 08:22 PM
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Thanks G,

I put it back in but it would not lock. The IV nurse said it was a faulty one (just my luck) Anyway - she put an extra piece in that should lock it tighter and hopefully we will be ok. Next meds start around 8 and my PSW leaves at that time - leaving me on my own with him if anything happens. I don't know how to transport him myself or get him in and out of bed on my own. I am worried. But confident that it will be ok.

I sure hope so. I got such a tummy ache when Josh left 15 min ago - knowing I'm going to be on my own.

Barb

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