check this out! discharging on monday

Discussion in 'General Parenting' started by Jena, Jan 27, 2011.

  1. Jena

    Jena New Member

    get this go into mtg. today and they decide difficult child's ready to discharge. they said our job is done. she has alot of other mental illness and your best returning home to handle that.

    so i said you guys really think so? they said she's doing what she's gotta do for over a week now, there is no reason to hold her here any longer.

    so....... i gotta scramble around for aftercare for her. i gotta have numbers and releases by monday early because they wanna stay in contact with-the aftercare team whomever their going to be.

    she's apparentley still orthostatic on and off they said it's going to take a while. she's on restriction activity wise.

    my reaction? i left their shaking i think. it's taken me all day to calm down and be able to say ok husband book us a flight.

    she has last day in dtu tmrw. monday early she has an mri to see if her cords are tethered the whole peeing at night each night. so we'll take pics with us to new york for surgery if they are tethered. also monday they gotta check her out to see if she's medically able to fly. and tmrw. she meets with hypmotists again.

    than guess what she pulled at dinner tonight? shut down, my throat hurts. go figure
  2. pepperidge

    pepperidge New Member

    You would think they would want a few days to see how the weekend goes (maybe the snowstorm will impede ex h from getting to Oregon lol). Seems pretty quick. If she goes a few days without eating at home would it affect her weight and health? I'd be nervous but it is also good news I guess.
  3. Jena

    Jena New Member

    i'm very nervous. yet they said there is no reason for her to be there any longer and they can't even justify it to insurance company anymore. thought i'd have alot of mixed reviews surprised to see one response to this. i gotta try and trust in the doctor's yet my gut's having a hard time. she was 95 on admit, she's 103 now. she's still flying orthostatic on and off thru day they said that happens sometimes they can't explain it.

    i saw her pull the shut down thing tonight and panicked bigtime inside. yet than tongiht i've been pushing her to talk to kids here. so past two nights she has been. she baked cookies with them tonight. tmrw their making cup cakes. i bet she feels like wow im going back to no friends no life. than boom anxiety hits throat jams up. i have a strong feeling this will be something difficult child battles her entire life when anxiety gets real bad that throat muscle will tighten on her. i hope im wrong yet thats what my mom gut is saying to me.

    let's remember most kids wtih food phobia are discharged after eating 3 meals they fly back home zero relapse. ofcourse my difficult child is loaded mental illness.
  4. Jena

    Jena New Member

    ok yea im sitting here in bed in our ronald mcdonald room kinda freaking out a little. i mean shes still orthostatic. she didnt' regulate yet the bodies still healing. and im bringing her home? she's only eaten solidly for 8 days straight. yet they tell me if i want to keep her insurance wont cover it. yet they feel she's good to go. im just not feeling it. yet i have no choice.
  5. pepperidge

    pepperidge New Member

    Maybe they know some good phospitals on the east coast where she could be admitted if she stops eating to deal with her psychiatric problems. Too bad. Jena, what if you took a little time getting back hom? Could you stay at RMD a few days, meet with your therapist one last time, gather strength for a few days before going home?
  6. graceupongrace

    graceupongrace New Member

    Wow, Jena! I totally get the combo of happy and nervous. difficult child has done amazingly well. At the same time, you've finally gotten some great support, so it has to be hard to think about flying solo again.

    I know you're dreading the xh visit -- understandable. But it may be helpful to have that occur where support is in place if needed, vs. at home when you're pretty much (OK, totally -- lol) on your own.

    I love that they want to talk to the aftercare providers. But are they giving you any strategies to help prevent a relapse? Or have they taught her some skills to use when she starts to feel her throat tightening up?

    Lots of hugs and prayers. You are a true warrior mom!
  7. susiestar

    susiestar Roll With It

    Is xh still coming out if she is coming home on Monday?

    I understand why you are so nervous. The surgery for the tethered cord would be best done at home anyway. Chances are that insurance might not even cover it out there, depends on the policy but usually they want you at home if docs there are in any way able to do the procedure.

    This has to be scary. Keep pushing for docs who will pay attention. Also push for a therapist for YOU when you get home. At least it will help you curb easy child's behavior if you are home??


    You have probably used your hospital gift card, but if you haven't you might consider passing it on. Not sure how easy it is to get to the hospital to eat, Know what I mean??
  8. HaoZi

    HaoZi Guest

    How much have they worked with her on ways to help her relax into eating when she's anxious?
  9. DDD

    DDD Well-Known Member

    Honestly don't know what to say. Doesn't quite make sense that they would know Ex was coming and yet wait until now to tell you. on the other hand it does make a little sense that if their specialty is eating stabilization that the insurance company would be eager for discharge.

    I'm sorry that this change has blindsided you. You're probably not quite ready to jump back into your own household issues yet. I'm sure your fighting to find the serenity to accept the things you can not change. Sending hugs. DDD
  10. Andy

    Andy Active Member

    I hope this makes X decide not to come out. Tell him you are on your way back, no need for him to waste the plane ticket, he can see her next week. I was wondering if he insists on coming for just a few days if he could bring easy child with. You and easy child could have a nice get together while he visited with difficult child? It might be a nice break for her also.

    Then, see how the weekend goes. If difficult child truly shuts down and backslides, I would think the hospital would get insurance approval again to keep her longer. You can then call X and say, "Sorry, she shutdown again they want to keep her." If only he can see that she needs to focus on herself and any visitors beyond husband is going to make her backslide again!

    As for the ROI's (releases), they can give you blank forms for you to take back to your aftercare team. As you get them lined up, you can sign the form and hand to the provider on your end who will then contact this facility. Many places will not be available on weekends to do this and one day to have everything line up is not always possible - especially since we know you have been searching for months and months to find the proper care.
    If there is a piece of the puzzle not set up yet, don't worry about it - just do what you can do without panicking and the rest will fall into place within a week (hopefully).
  11. Bunny

    Bunny Guest

    While it's great that she has eaten for 8 straight days at the hospital, that is a very controlled enviroment. I think that the real test will be how she does when she gets home. Like you said, is this something that she is going to battle all her life when she feels like she is starting to lose control and her anxiety starts to build? Do you think that's why she started to shut down last night? Is she nervous about coming home?

  12. Jena

    Jena New Member


    ex is not coming out!!! i told him we need the money to get out of here, rental car, ronald mcdonald house, flight for 800. so he says ok i'll send you 140 western union before you leave lol. Loser there i said it!!

    so your all getting the same gut wrenching feeling i am, especially since she shut down on me last night? i'm just nervous she's going to pull this again i really am. and i dont' have the money to fly back out here again. as far as home's concerned it is what it is. i mean how is one supposed to line up an aftercare team in a day
  13. AnnieO

    AnnieO Shooting from the Hip

    Yes, she shut down last night. She was probably blindsided too!

    Fact is, there - she knows people who are in some ways like her. At home? Not so much.

    I don't have any advice, sweetie. Just lots of hugs. And keep at it!
  14. donna723

    donna723 Well-Known Member

    So ... did she eat this morning?
  15. Jena

    Jena New Member

    andy it doesn't work that way at all. i HAVE to give aftercare numbers to them here before i get on the plane, so by monday when they officially discharge numbers have to be given. so yes i am scrambling since yesterday at 1:30 my time 4:30 new york to find a new therapist and family therapist and pysch doctor cause i hate mine.

    donna hey shes still in bed. we have dtu at 9:30 today. they have us a projected 8 weeks here, not heading into my 4th im out?? just doesnt' seem right to me is all.
  16. Jena

    Jena New Member

    oh and easy child forget her i am not doing anything nice for that child upon return other than give her rules and contain her. that'll be my gift to her. shes' now smoking and in her room ,drinking, just all sorts of insnaity is going on in my home. isnt' taking dogs out their eating furniture. ask me how excited i am to go back there? :) lol
  17. TerryJ2

    TerryJ2 Well-Known Member

    Jeez, that is a lot of insantity ! I can see why you don't want to go back.
    I suspect she will have shutdowns on and off. Progress is never perfect.
    You've done so much for her, I just don't know what else you can do.
    Many hugs.
  18. Jena

    Jena New Member

    neither do i quite honestly. spoke with-therapist thsi morning difficult child had a major meltdown stating she refuses to eat, it's all bs she will go on a liquid diet her throat hurts. soo i said to the therapist i think you and i both know this is something that will continue happening. each time her anxiety gets to an unmanagable level she will shut down again and throat hurt. we haven't seen the last of this. my mom gut called it 9 mos ago when i said when my kid has a new behavior problem etc she holds onto it.

    she agreed yup very scary. working like crazy trying to get aftercare piece together. alot of doctor's are nervous about taking her on, alot do not take insurance still on phone with-ny
  19. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    So if she refuses to eat while there, will they keep her? Did they have any response to their "she's cured" attitude? Obviously it can again be justified to the insurance company if the child is back to not eating.
  20. Jena

    Jena New Member

    i haven't heard from them yet today. gotta get her at 4 today. overall they stated quite simply difficult child has alot of other mental illnesses that are what they are. her bite chew swallow is down the fear is dissapating yet if she's eating with them which she probably did today and with me even minimal tha'Tourette's Syndrome that. its' not so much keeping her here it's more of her just being her.

    we all agreed that i could be out here for 3 mos and she'd pull the same in regards to flying home. her subconscious and conscious mind do not work in sync. so iv'e taken another approach i'm lining up things that she can look forward to upon return. she's all over the map about returning to new york.

    so far i have riding lessons lined up in two weeks if she's medically stable, i'm working on singing lessons and also a home schooling group meet up, sunday school called churches in my area and contacted the one kid she played with who has asperger's they played along side yet not together..... typical. they said they've never met anyone like difficult child before. how many times have i heard that.

    i just hope i get home and it' goes fairly smoothly and doctor's call me back monday. because if not next is a residential. not eating is a life or death thing. can't allow her to damage her body anymore. she's still orthostatic due to what she's done to herself.