difficult child update

Discussion in 'General Parenting' started by Jena, Jan 11, 2011.

  1. Jena

    Jena New Member


    just figured i'd update quick. feeding tube is in. it was a very bad experience for all. it took about 7 hours in total, 3 nurses and husband and i to hold her down. she cut me up and scratched me. screamed, begged, it was let's just say something i'll never forget.

    i had to go in the room, the 3rd try when i heard her screaming husband was in there i couldn't handle the 3rd try and i planted her told her it was our last stop she needed help and she'd better cooperate.

    in it went. husband slept on the bed because he came straight from airport i slept in difficult child's wheelchair on and off thru night. i think i got 3 hrs. difficult child got a ton of hours all she did was sleep.

    she's on zyprexa 5mg. they had to titrate up quickly. she is having a problem with her heart. we aren't sure what it is right now. her resting heartrate is way too highly. doctor said she's now hydrated so their observing today to see if it goes down if not i am not sure what next step will be.

    due to that she has a heart monitor, and is on bedrest. she's a mess basically. doctor said i did a good job at keeping her hydrated she wasnt that dry yet her hearts taken a beating from the yo yo up and down and what she's done to her own little body.

    it's all sad. overwhelming. doctor told me to go see a therapist because she said you look like hell, difficult child has beaten you down badly all these years and i need you alive when shes gets out. she said to husband can you make one more trip out for her or can someone reprieve you at some point so you can go home take a break.

    i did hold it together well yet yea past 12 years have beaten me down. so husband leaves tmrw. we just got back to room to take showers, change clothes go get breakfast and than head back to hospital.

    after tmrw i'm on my own. her hospital admit will be longer than expected due to her condition. about 2 weeks roughly in hospital or more. probably 2 months out here living.

    ok just figured i'd share with-you guys. heart things unnerving me, amt of time out here is unnerving me. i knew on this trip i was on my last leg. i hate that everyone keeps telling me to go to therapy though. husband is like calm down you have killed yourself for years with her. it's time to take care of you a little
  2. CrazyinVA

    CrazyinVA Well-Known Member Staff Member

    I have to tell you, at times during Oldest's many hospitalizations, when she threw tantrums over this treatment or that treatment, I had to leave the floor and disengage. She used to scream bloody murder when she didn't get her way, sometimes even in pre-op with just a curtain separating her from the next patient. I would tell her I loved her but that I needed a break, then go downstairs to the hospital chapel, or the cafeteria, and just let the nurses and doctors do their job, without me. I found that at those times, my being there actually made Oldest worse, because she played on my emotions and tried to manipulate me with pleas of "don't let them do this to me!" Without me there, that component is removed, she couldn't emotionaly manipulate the nurses and doctors quite so easily. I know it seems "unnatural" to leave your child's side when they are in such a situation, but it really is necessary sometimes, for both your sakes.

    Hugs. I know this is a difficult journey for you.. please take care of yourself.
  3. SearchingForRainbows

    SearchingForRainbows Active Member


    Just reading about this is heartbreaking... Praying difficult child's heart rate improves now that she is hydrated... You've done everything you possibly can to help her. It's time for you to take care of yourself while your daughter gets the care she needs in the hospital. I know - You've heard this a zillion times already!!! I think I would hate it too if everyone kept telling me to go to therapy. There are lots of other things you can do to take care of yourself. Catch up on some needed sleep, begin taking daily walks, escape with a good book, etc., etc., etc., Is there a support group anywhere nearby for parents who have children with eating disorders? It might help just to talk to another mother going through some of the same HE77 you are. And, you know we'll be here for you anytime you need us!!! Hugs... SFR
  4. smallworld

    smallworld Moderator

    Jen, sending many gentle hugs across the country to you. A feeding tube plus Zyprexa saved my little girl -- I hope the same treatment saves yours, too. This treatment facility sounds like they know what they're doing, and you have to believe they are going to take good care of your daughter. Now it's time to take care of you. This kind of parenting is not for the faint-hearted -- there's not a parent who visits this board who wouldn't benefit from therapy. That includes you. Take advantage of the time you have there to start seeing someone and process what you've been through. It will help you take better care of both of you once C is released from the hospital.

    Again, hugs going out to you. I'm rooting for both of you.
  5. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Sending hugs and prayers your way. This is such a difficult situation and taking care of yourself is good advice. I know it's hard but it is so important in order for you to be at your best for your daughter. I remember not wanting to go to therapy for myself but was glad once I did. Our difficult children do wear us down.
  6. Marguerite

    Marguerite Active Member

    I'm so sorry her heart is affected. Not surprised though. I as hoping she was young enough and resilient enough to not have done this damage. However, they're watching it now, she will get the right sort of help now.

    People keep telling you, because it is obvious to them. And also because in so many cases like this, therapy for the parent is needed. Now, while you have the space (while someone else is monitoring her) - organise a therapist. Someone out there, someone nearby. You can still be within coo-ee for her and seeing your own therapist.

    it is not a reflection on you or your capability, to go see a therapist. If anything, it helps you affirm yourself as an effective, strong parent and helps you stay effective and strong. Consider it an investment in your parenting, if you don't want to see it as an investment in yourself.

    The best gift you can give your family, is you. Your health, your sanity, your happiness. It is not selfish to do this. It is an insurance policy. You've had a lot of people (including me) nag you about this. I'm nagging again.

    You have the chance now, while you are out there with your daughter. Grab the chance and use it.

    Also, consider taking up knitting or crochet. it helps you burn up some of that adrenalin and nervous energy. I got back to knitting thanks to my cancer - the Cancer Centre has baskets of wool and knitting needles, people who are waiting for their treatment can choose (or not) to pick up some knitting and knit a row or two. Instructions are in the baskets. The aim is to complete squares which get sewn together to make blankets which get sent around the world or donated to local people who would otherwise not have anything to keep warm.

    Or you could knit easy child or difficult child something. I have a very easy shawl pattern knitted on rocket needles. If a shawl is too much, one ball of wool makes a small scarf.

    The thing with knitting while you are otherwise hanging around - each row helps you mark time and also feel you are doing something productive. Making progress. It stops you feeling so hopeless.

    I knit in therapy sessions myself. And in church. Anywhere. I use circular needles because I find it easier on my weak muscles. And I do not consider myself a strong knitter. But every row is progress.

  7. susiestar

    susiestar Roll With It

    First, LOTS of hugs. It must have been terribly hard to go through getting the tube in - almost makes you wonder if they could have sedated her (for YOUR benefit, if not her own).

    I know exactly how scary the heart stuff is. She truly has beaten her heart up with this problem, and I am glad the docs here are keeping a very close eye on her. At one point a doctor did an EKG wrong on Jess and gave us a potentially devastating diagnosis of a heart disease that could kill her at any moment with-o warning - then sent us HOME with NO way to help or treat it and a FIVE MONTH wait to see a pediatrician cardiologist! It is why she got a cell phone at age 12 - so that if she was at school she had a chance of dialing 911. So I truly DO know your terror and worry right now. She is young and with help this will heal.

    They are right about a tdocs, even if it drives you crazy. Ask the hospital if they have a family therapist that you can see. in my opinion this should be a part of difficult child's therapy because it is the aftermath of living with her and getting her through this.

    Please do NOT underestimate what you have done the last months - you kept your child ALIVE through a very life threatening illness and you found a place that can and will help her. That is HUGE and INCREDIBLE! Like all heros who do amazing feats, you are worse for wear at the other end of the part where you do most of it alone. So yeah, you now need some help. It was terrifying and awful and painful and isn't over. It is just that now you have help.

    When you can, leave the hospital. You know difficult child is going to protest, that is part of the illness. You KNOW she is safe and being cared for. Learning some independence at her age is vital, and so is learning that Mommy is actually a person with wants/needs/etc of her very own that have nothing to do with her. Taking time to care for YOU now that she has other adults to care for her is going to be vital to HER recovery every bit as much as hers. PLEASE see a therapist and also do some things for YOU. Heck, ask the staff if you can get a massage somewhere - and go do it!

    The updates are really appreciated, so thank you. I hope that this trip is every bit as helpful as difficult child needs and that you are able to deal with the feeding issues as well as find medications that will really help her. You are doing an awesome job - so reward yourself and be nice to yourself.

  8. HaoZi

    HaoZi Guest

    Oh Jena... just *HUGS* for it all. How rough. If you won't see a therapist (which might at least give you a good chance to vent to someone you don't have to live with), would you consider taking an hour for yourself and getting a relaxing massage or pedicure? It sounds so simple, but it can really help.
  9. TerryJ2

    TerryJ2 Well-Known Member

    Oh, Jena.
    I can just imagine what you look like and feel like, especially to have the doctor(s) comment so blatantly like that. I remember when my mom got pneumonia for the last time. My little sister was the main caregiver (mom had cancer), my dad has Alzheimer's, my sister's daughter was on drugs, it was chaos. The paramedics came in and set up shop with-their equipment on Mom's bed, and as they were waiting for her O2 level to rise, one of them looked at my sister and said, "You the main caregiver? You don't look good. You have to take care of yourself."
    Fine, fine, fine. She tried to blow him off.
    "I mean it," he said, "You don't look good. Go see a doctor. And a therapist. Get some medicine."
    He just wouldn't let up.
    Alrighty, then.
    Turns out my sister had an infection ... don't know how he figured that out but anyway, she had lost weight and her color wasn't good.

    So, the dr is right. You're in a hospital setting. There must be a slew of doctors' ofcs ringing the hospital complex*, in between Starbucks and medical supply companies. Make an appointment for a physical and a CBC and make sure you're not low on iron and the basics. This is stuff you can do now, easy stuff, like take vitamins. Then make an appointment with-a therapist and cry your heart out. Hopefully you'll get someone who cuts to the chase with-good advice and ideas and not someone who just says, "Hmm, what I hear you saying is that you're under stress." (WHACK!!)

    * I found another thread that said you were at a Ronald McDonald House and I don't know if that's technically connected to a hospital, but my advice still stands. FWIW.:grouphug:
    Last edited: Jan 11, 2011
  10. HaoZi

    HaoZi Guest

    Sudden thought: if you can't afford a therapist, most major hospitals have a non-denominational chapel, perhaps you could talk to someone there if you need to.
  11. Marguerite

    Marguerite Active Member

    Ronald McDonald House would have to have loads of information on resources for you, to get some help for yourself. This would be such a common issue, carers so often neglect themselves, and now is the best time to get help.

    As I understand it, Ronald mcDonald House is a residence attached to a hospital (not always physically) where families can stay with a family member who needs ongoing care, but for various reasons it is too awkward to stay at home and commute for treatment. We have them in Australia too. I know the ones here have a lot of resources they will put you in touch with if you ask. But you do need to ask. Unless they've been nagging you too?

    Seriously, Jena, grab the helping hands being offered. Use them, as you would any resource. Set an example for your kids, to reach out and accept help wherever it is offered. Show your girls how easy it is to accept help.

  12. barneysmom

    barneysmom Member

    Jena, I think it's a great idea to back off (take a break and take care of yourself -- whatever that looks like) now that you have a whole hospital watching over your daughter.

  13. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Im glad the feeding tube is in and the progress can start. I always hated having to be in the room when anything icky happened with my boys so I just left and let the professionals do the dirty work. Kids tend to do better that way anyway.

    I do think it would do you good to get some relaxing in and if that means you can find someone to talk to, that would be great. Im sure the RMH has some sort of support group for people staying there and would know about short term therapists in the area.
  14. graceupongrace

    graceupongrace New Member


    What a tough day! But so glad these doctors seem to "get" it.

    The others have offered good advice. When we're focused so intensely on helping our difficult children, it's hard to see the toll it's taking on us. But remember, you're at a place that takes a family-based approach, and that means they're concerned with the well-being of every family member, including you. Let them help you carry the burden of difficult child's care, and get some care for yourself while they're looking after her.

    Thank you for keeping us posted. Sending you lots of gentle hugs!
  15. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    so glad for the update and it sounds as if this hospital is really going to make a difference. They seem to be a real step forward from where you/she has been.

    Do as they suggest, take the time to work on you and recharge your battery. Sleep for a few days then get started rediscovering Jena.

  16. Bunny

    Bunny Guest

    (((HUGS))) Jena. I know that having the feeding tube put in was terrible for you, but I think that you did the right thing by walking away and letting the doctors and nurses do their thing. I'm glad that husband is there with you, even if it's just for a few days. This myst be very draining and to have someone there to lean on helps.

    I know that I am faily new here, but canm I join the chorus of others who think that you need to take care of yourself? Seeing a therpist is a good place to start. It has helped me tremendously! And the doctors are correct that you daughter, and the rest of your family, will need you to be strong when she comes out of the hospital, goes through treatment, and eventually goes home. You need to be strong not just for everyone else, but for YOU as well. You have travelled a long, hard road with her and it's time to let others take the reins when it comes to her care, and you have to pick up the reins for your own.

    I'm glad that you were able to give us an update. I hope that treatment goes well for her. Keep us posted.

  17. Mom2oddson

    Mom2oddson Active Member


    Your daughter will probably have to work on a lot of her issues. And it is going to be very scary for her. What better message can you send her than, "Look, I'm getting counseling too! We are in this together. I've got your back and you can get mine." Just MHO. Take care of yourself so that you'll be strong enough to take care of your girl.
  18. TerryJ2

    TerryJ2 Well-Known Member

    Jena, are you there?