Discussion in 'General Parenting' started by Jena, Jan 13, 2011.

  1. Jena

    Jena New Member

    thank you for the warm wishes on the last post i did. it's very appreciated. :)

    sorry i havent' been on it's been very busy and hectic here since we got here. i had to drive husband back to the airport today. that was rough. he extended his trip by a day. he's been awesome thru this. i gotta be honest i'm going to be lost with-o him here. he was so helpful in a lot of ways.

    difficult child we have a cardiologist onboard now. she's got a regular heart monitor and now they've thrown on an additional 24 hr. monitor, their doing an eco cardiogram. and we'll have the consult with-cardio guy by monday.

    zyprexa's working super well for her at night for sleep. totally different experience than what we saw at him in our environment. here it's a dark room, very warm due to her condition, not home with-dog's barking, husband' getting in at midnight from work etc.

    she's adjusting to the feeding tube. she's up to 1,800 calories a day now. god willing all these heart issues with-the heart rate will be just anxiety. her resting is so very high. she was 190 on admit. than running 150 resting, now it's down to 125 to 140 resting.

    i dont' know when food will be introduced yet. she's not stable yet and we're just beginning our very long leg out here. their predicting at least 2 months now living out here.

    the staff is great, ppl listen to me, i have let lose of reigns in a major way. i have slept each night at the ronald mcdonald house and go thru alot with-her to detatch her behavior is bizarre during that process.

    me, my ms i'm assuming that's what it is was non existant first out. than today it flared something awful. i have made call for therapy for me, ill get a call bk today. i need something to help ground me.

    what else can i say, we're out here alone it's a little creepy. first day without husband will be an adjustment time for me. we ate out, took walks when she was in school for an hr. we're already talking about our next trip to eachother.

    on another note if you've made it this far sooo long sorry. easy child kinda lost it when we left. we went on facebook to leave her a message and there were pics posted of her smoking cigarettes beer in hand with- a boy same in our home with a ton of other ppl.

    yea disappointing to say the least. we both planted her, husband was mad at her bigtime. she cursed us both out via text stated she will not live there with-him while i'm gone etc. a real nightmare. so we aren't sure what will await him when he lands.

    i have to trust hell do the right thing and handle her accordingly.

    i hope everyone's well. i'll have time to catch up once i find a routine for myself which is KEY so i dont' lose my mind.
  2. AnnieO

    AnnieO Shooting from the Hip

    I'm glad to hear that they are taking you seriously. That will help - when difficult child sees everyone's on board, no arguments there - less stress for her.

    easy child... Sigh. Pretty sure she's scared and worried, and that's why the acting out. She won't live there with him without you? Why not? She has to have a reason.

    Right now, though, concentrate on you, and difficult child. And I am so glad to hear that she's sleeping...
  3. DDD

    DDD Well-Known Member

    Thank you for the update. Like everyone else I am keeping you all in my thoughts and prayers. I'm delighted that you are sleeping at McD's...you need the environment of support and break from the natural tension that comes from the hospital setting. Do they have a computer at McD's? When I stayed in a similar but unaffiliated facility following easy child/difficult child's brain surgery I was able to keep in touch using the computer there. It was a comfort to keep the families (CD and birth) up to date.

    It sure sounds like you chose a great place to go......even if it is far, far away. Hugs. DDD
  4. Jena

    Jena New Member

    far far away....... and parent's are the place aren't very talkative. i think my easy child will help me, talking to husband on occassion and i've decided i'm going to write a book. this diagnosis food phobia isnt' known enough and i know there are kids out there getting wrong treatment as we did and set us back. whether or not it'll ever make it to a shelf somewhere who knows. yet i feel like something positive helping other ppl has gotta come out of all this junk :) plus i'll be bored here and lonely
  5. Jena

    Jena New Member

    she's in bed all day though, only allowed to go to school for an hr in the wheelchair and a 15 min. excursion thru building in wheelchair. tubes coming out of everywhere. yet they have an Occupational Therapist (OT) person to work with her, an art therapist that comes in each day, also another woman to rent games, movies etc from. really good hospital we're at.
  6. Bunny

    Bunny Guest

    Hi, Jena! I am glad to hear that she is sleeping at night and that they are listening to you and your concerns. That is so important. Did husband get home alright? Is easy child saying that she don't live at home if he's there without you because she's angry that you left to take care of her sister? Does she feel like you abandoned her? I hope that she can hold it together while you're out there.

    Keep us posted about how you all are doing.

  7. pepperidge

    pepperidge New Member

    i know you didn't want to move easy child to Oregon but maybe if she keeps acting out she needs to come out there and go to school there. Just what you need. lol.
    glad things are going well. I think you are right establishing a routine will be key and perhaps you will be there long enough that you transfer it home with difficult child once you get home.
  8. Jena

    Jena New Member

    hi. easy child is going to be 18. she wont' go anywhere with-o agreeing to be honest. difficult child's tachycardia, so i get eco cardiogram results later today. they just did it. we looked into past she's been running high for a while now. her resting is 140, she admitted at 190. and she is no longer dehydrated. we'll c. hoping medications i've given for years inbetween her extreme anxiety havent' done damage. sooo wish husband didnt' leave. i set up therapy for me on monday with some therapist they referred me to.
  9. HaoZi

    HaoZi Guest

    Glad to see both of you getting some much-needed help and rest. Our thoughts are with you, and even if you can manage a lengthy article instead of a book, I think it would be very helpful to others.
  10. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Glad you are getting to sleep at the RMH. That should let you recharge your batteries some. I imagine as difficult child gets a bit stronger she will be able to be up and around a bit more. I always found the Occupational Therapist (OT) and art therapy pretty fun.

    easy child is just acting out. She will get over herself with time. When her antics dont win her any prizes she will move on to curbing her behavior.
  11. graceupongrace

    graceupongrace New Member

    Glad difficult child is getting the help she needs, and glad you're getting a little bit of a break. It must be a huge relief to let someone else share the burden of her care for a while -- and to know she's in good hands.

    Keep posting when you can. We care!
  12. Jena

    Jena New Member


    it is, the staff here is amazing very kind empathic, they just all get it. theres no arguing or debating it's just yup we get it. it's sad the shape shes in though. tried to do art today for an hr. and we had to go lay down her heartrate was too high. they say her heart is weak and her cardiovascular system took hit due to what she's done to it.
  13. HaoZi

    HaoZi Guest

    I'm so sorry Jena. I've seen how rough heart problems in kids are on the parents. How are you both doing outside of that, and have they said how that can be helped later?
  14. TerryJ2

    TerryJ2 Well-Known Member

    Thank you so much for the update, Jena. It sounds like things are moving along.
    I know you will miss your husband. He sounds wonderful.
    And I'm so glad the staff takes your seriously. I cannot imagine they wouldn't.
    I'm sorry about the scary heart rate and the damage. But it sounds like she's in a safe place. Great that they have Occupational Therapist (OT) and art therapy, too.
  15. Jena

    Jena New Member

    yea i dont' know if i posted it my days are so long it's overwhelming. they met us the first day with a therapy dog. awesome move for a nervous kid. they have art therapy, physical therapy for her, this cool movie room with nightly movie rentals, ds rentals, you name it, they have a movie theatre with movie chairs mini ofcourse, computer games a wii. now this isnt' the clinic this is the hospital where she's currently admitted. they work closely with the clinic. we haven't even seen that yet.

    this hospital is by far the most amazing kids hospital ive seen. the staff well they are my security blanket right now. being out here alone with a sick kid is alot more challenging than i thought it would be. it's draining and hard having no one to talk to all day. and little talks with them through the day get me by believe it or not.

    unfortunately she's shut down on liquids they had to hydrate because she refuses to swallow with feeding tube. HUGE problem. because they refeed with tube in.
  16. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm really glad to hear that the staff is so good at what they do. Writing is a good idea; I think it really helps to get thoughts down on paper. Keeping all of you in my prayers. Hugs.
  17. TerryJ2

    TerryJ2 Well-Known Member

    Awesome place! Great idea to meet her with-a therapy dog.

    I'm so sorry about the backsliding with-the liquids. This is no easy feat.
  18. Jena

    Jena New Member

    no it isnt'. her phosphorus levels are now stabilized so i'm happy for that. we're are just taking it one day at a time, bit by bit right now. my rental car had tire blow out yesterday. i got art therapist to sit with her for a bit so i could run and do laundry for her and i. than tire blew. long not so funny story. 3 hours later tire repaired.
  19. HaoZi

    HaoZi Guest

    I can't think that trying to swallow with the tube in place would be easy, but if she can get past that it might really help on the more solid foods later. How are you and everyone else holding up otherwise? husband and easy child doing reasonable or at a total loss without you there? Is his ex texting you while you're out there or has she quit for now?
  20. Jena

    Jena New Member


    i just posted in other forum about me. husband is ok, easy child is stabilizing. they haven't even talked yet because he flew in late and has been at work ever since i keep reminding him to call home and check in. like a baby i gotta remind him.

    the ex doesnt' text me she went at him entire time he was here. did you land are you ok when are you coming home, what times' flight, do you want me to shovel path for you at your house? she's absolutely insane. to say the least.