At the Hospital

Discussion in 'The Watercooler' started by susiestar, Nov 16, 2010.

  1. susiestar

    susiestar Roll With It

    Hi Everyone!

    We are safely at the hospital in Ft Worth. The drive was uneventful and we found some great books at the bookstore we stopped at before going to the hospital (Jess was in need of books to help her through the hospital stay, of course!).

    They did the 24 hr EEG starting yesterday afternoon but we have not gotten results yet. The pain people were here and did a full assessment. The doctor will be working with the neuro doctor to try to figure this out. A psycho physiologist was in for an hour or so and will be back tomorrow to help Jess with biofeedback and meditation etc... He is great.

    I am not staying at Ronald McDonald House. Jessie's room is HUGE for a hospital room. It has a nice recliner and a couch that the back cushions come off and it becomes a nice twin bed. I didn't even take all the back cushions off last night.

    Jess is off ALL medications until tomorrow when the doctor wants to start all new. A short medication wash and then he will start from scratch. The biofeedback guy thinks he can get our insurance to provide some home biofeedback equipment, even just a computer program and electrodes, something to help her with it at home. He is also going to teach her self hypnosis tomorrow.

    So far we LIKE the docs, nurses, therapists and everyone. They are super nice, very child friendly and they "get it". The pain nurses really understood that when Jess is not shaking it is because she is concentrating on not shaking, that it hurts to suppress it fully, and that she cannot fully concentrate on things if a substantial part of her attention is focused on not shaking and the pain. That is WAY more than the pain people in OK ever did.

    I am holding up better than expected. Hurting a LOT, but coping. I cannot walk much at a time but did manage to go down to the cafeteria and then out to the car to get my clothes and the rest of our things. I had to take a wheelchair to lean on and I put the stuff on it to get it back. I am pretty much done with walking tonight - my back, knees and left calf are hurting like crazy. Not sure why the calf, it is a new thing, but oh well.

    I will read what I can and will update as I can here. They not only have wi-fi, the tv here has movies, video games including Ms. Pacman and Joust (favorites of mine, lol!), and internet access with a net nanny!

    Hugs to all!!
  2. Jena

    Jena New Member

    wow, can i come stay there? LOL just kidding.

    glad u like all the doctor's and the place. hope it goes well with-new medications. get some rest tonight.
  3. gcvmom

    gcvmom Here we go again!

    Sounds very promising! I'm glad you are able to stay in the room with her. That would be my preference in that situation. I hope you finally get some answers and some treatment strategies for her!
  4. ThreeShadows

    ThreeShadows Quid me anxia?

    Hugs, Susie. Isn't it a wonderful change to actually have professionals LISTEN to what you say? How sad that it has been such a struggle for both of you.

    I'm glad that you can spend the night with your precious child, you are a great comfort to her.

    I'll be praying for a diagnosis and some healing.
  5. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Well, glad they have all the amenities so you can stay. Glad you all got there well.

    Only reason I asked about the mcDonald house was because while the hospital room I was in had the recliner and couch for Tony to sleep on, it wasnt very comfortable and he refused to sleep over very many nights. I was upset about that quite a bit. I worry with your pain stuff that you will get to be in too much pain and need to at least spend a few nights out of the hospital just for your sake physically.
  6. susiestar

    susiestar Roll With It

    It is awesome to have them listening!

    Janet, if the pain gets really bad they will help me get a bed at RMD or I can ask my folks for $$ for a hotel. I would MUCH rather be here and am actually very comfortable on the bed in the room. It has a decent mattress, better than any hospital bed I was ever in. I promise I will get help if I need it. Thanks for thinking of me. I am sorry Tony didn't spend many nights with you. My mom did tell me on the phone today that if I need a hotel room and don't call to ask for help that she will be royally furious with me. So I know it is there. I just would prefer to be here with Jess.
  7. Hound dog

    Hound dog Nana's are Beautiful

    Yup. Got to say the largest battle in getting a correct diagnosis and treatment plan is finding the right docs.

    I'm so glad you've finally found them for Jess. It's been such a long time coming and this poor girl needs a treatment plan that works! The hospital and staff sound awesome! Saying a prayer and keeping body parts crossed for Jess that they can get this figured out and find effective methods to treat it.

  8. Mattsmom277

    Mattsmom277 Active Member

    It sounds like things are off to a good start with the docs and tests. It makes a huge difference to have people truly listening and working together as a team of professionals to try to find some answers doesn't it? I think you're in the right place :).
  9. nvts

    nvts Active Member

    Hey this sounds like an early Christmas Present! To have people listen has got to be fantastic! Maybe the biofeedback guy can help you with some self-hypnosis that can help aleviate your pain as well! It might be nice for when you get "crampy and sore".

    Rattling many beads that things go swiftly and they actually find the problem!

  10. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Well it wasnt that bad for me until the very end when I could actually figure out he wasnt For the most part I was so out of it, I didnt have much of a clue.

    You are lucky the beds are nice. Heck, my hospital bed was a I hated it. Of course, I kept thinking I could get up and walk and that just wasnt true so I thought they were lying to me.
  11. susiestar

    susiestar Roll With It

    Jessie is actually jealous because the bed I have has a better mattress than her hospital bed. After a few hours in the hospital bed they all get kind of hard and squished down. Luckily Jess can get up and walk around.

    We are on the rehab floor and everyone here (patients) has to wear a gait belt if they are out of bed. It is a 3 inch wide canvas belt that has to be fastened firmly so that if you fall someone can grab it. The first full day she was here she had to have someone holding on to the belt if she was out of bed. Drove her nuts but she was really patient with it. I mostly had the staff do it because I would not be able to hold her up if she fell, no way with my knees and back. Finally on Tues afternoon the physical therapist evaluated her and said she was fine to walk by herself. So now she just has to wear it but not have an adult with her or holding on to her.

    She has already read 4 of the 6 books we got at the bookstore before we came! One of them was 3 books in one volume, so she has been reading a TON. I don't think any of her books is under 300 pages as she mostly reads adult novels about vampires and mysteries. I may have to go back to the bookstore tomorrow to restock her. They have a library here that we will check out first though. And they have a bunch of movies on her tv, so that will help keep her occupied. I hope they have more scheduled for her to do tomorrow.

    Today we have the hypnosis guy coming at 1, and the neuro doctor at some point, but other than that we don't have anything scheduled. They have a craft activitiy at 3 for all the kids. If she isn't up to going they bring it to her. Yesterday they brought her 2 cupcakes to decorate like turkeys, on Monday she made a flag with leaves and other stuff. Other than that we are just waiting here. She has hot and cold packs to help with the pain, and the hypnosis/biofeedback guy is supposed to help, but that is all.
  12. KTMom91

    KTMom91 Well-Known Member

    Sounds very promising!

    Hugs to you both.
  13. mstang67chic

    mstang67chic Going Green

    Coming in late.....but thrilled for you both!!! Echoing everyone else.....this sounds so promising. Keeping my fingers crossed, rattling beads, etc. Good luck!!!!
  14. HaoZi

    HaoZi Guest

    Keep us updated, it all sounds very promising so far. :D
  15. Nancy

    Nancy Well-Known Member Staff Member

    I'm so sorry I haven't been here to support you like you have been for me so many times. I stayed in my easy child's room when she had her three ear surgies, I couldn't bear to leave her, so I'm glad you are comfortable.

  16. susiestar

    susiestar Roll With It

    Today the doctor was here for a couple minutes. He said the EEG was "great" whatever that means, and he wants the PT and Occupational Therapist (OT) people to work with Jess. They have a lot of activities planned by the child life people. The therapy dogs came in today and were really cute and fun. One of the dog's owners was really snotty though. ALL of the kids had already held her dog and I asked if I could. She flat out said "No, you aren't a child and we aren't here for you. You can just go away." I was floored. So far she has been the only rude person we have encountered.

    Jess went all the way downstairs to the cafeteria to look around, then to the library on another floor, then she went to the dog therapy for an hour (just time to play with the 3 dogs). She was really tired from it, and got a migraine. The child life person tried to push her into going to another group but Jess held her ground and stayed in the room. I could see she was exhausted because she was whiter than a ghost, but the light was dim in the room so the lady couldn't. She tried to get me to make Jess go but I wouldn't do it. Jess did take me downstairs after her headache was better (they did give her medicine for that - it is the only medicine ordered for her). She wanted to go to the bookstore but missed it by a half hour. Then we got some food at the cafeteria and came back. She was exhausted again.

    Overall she is doing well even though her pain level is usually around an 8 or 9. I don't think they understand that she is going to smile and try not to really show it to people because she doesn't know them. She gets embarrassed because she hurts so she hides it way too well. At least the pain doctor believes that if you say you are in pain then you are in pain. Period. She told Jess that NO ONE can tell you that you are not in pain or it is not as bad as you say.

    I hope we start some medications or something tomorrow. PT or Occupational Therapist (OT) at least. She is going to the Breakfast Group in themorning. The Occupational Therapist (OT) has the kids all come eat together, which I think is a great thing.

    She has met a friend here. The friend is two rooms away and the girls are planning to do some board games tomorrow.

    That is the update for tonight. Hugs to all.
  17. ML

    ML Guest

    Thanks for the update. This sounds very encouraing so far!
  18. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Sounds very promising... I'm keeping up my prayers. Sorry you had to deal with the rude woman-glad it was only one. Hugs.