I'm BAck! Sorry for the absence!

Discussion in 'The Watercooler' started by susiestar, Oct 31, 2011.

  1. susiestar

    susiestar Roll With It

    We are at the hospital. Sorry to have been gone so long. First it was a problem with the bill after paying cash for a medication the doctor wanted her on - turned out it WAS covered but we had alread paid by the time it went through. Then there was a problem with the line going to the end of our street.

    It was a quiet week with no internet, lol.

    Jess is checked in and waiting for the eeg tech to come and hook her up. Given the EEG wires, she will be Medusa for Halloween. So far things sound good. Seems most people do NOT stay the full 5 days. The doctor has access to the eeg readings from his home and office, so as soon as he has seen enough we will go home. We packed enough stuff to keep us for a week, lol. I like this hospital a lot more so far. They have more than just junk food for the kids when food service is closed. Food service is cool - you call when you want food, 7 a to 7 p. and they bring it up. No deliveries of food just because thy have it fixed. LOTS of fresh fruits, etc... and your choice of many things. Plus, after hours, they have a freezer with pizza, ckn nuggets, and mac and cheese that can be microwaved. The fridge has juice, cheese sticks, applesauce, etc.... The other kids' hospital, the one we were at a year ago, didn't have anything but sugar/carbs and juices available on the floors. Of course they had four flavors of ice cream in little cups on the floors, but no real food.

    Even better, when talking to the nurse, she understood the difference between making the shaking stop by concentrating and having it stop when you are concentrating on something else. So far, no one has really seemed to grasp this other than the nurse at the current neuro's office (Dr. S is the current one, best in the state, last dr was Dr Scream a Lot, so Dr. S is NOT him). I have found over the years that if a nurse understands she can get the doctor to understand even though Mom or kid or patient can say the exact same words and the doctor will NOT believe it no matter what. So this is a good thing. The nurse at the other hospital seemed to understand, but she mostly nodded her head and made um-hmm noises, which only really sank in when we were leaving.

    Anyway, it has been an interesting week. One thing I LIKE about this hospital is that they give one parent tray for each meal delivered to the room, plus there is a snack bar that will give a parent a free lunch each day. It was really expensive to eat at the other hospital, like $8-$10 per meal for a sandwich and fruit type meal.

    Anyway, I can't wait to read how you are all doing. Jess had a freezng spell a week ago that was 7 hrs and the next day had a 13 hr one. So I hope and pray that this will get us some help.

    I have decided to force a referral to a rheumatologist after this, esp if this doctor can't/won't help.

    Jess is a bit bummed about not trick or treating this year, but Gpa bought her a bunch of candy and I bought a few bags too. I can't wait to see pics of the Halloween costumes of your kids, if you feel comfortable posting them!!!

    Happy Halloween!!!!!
     
  2. klmno

    klmno Active Member

    I'm glad to hear from you, Susie, and really hope this brings you and J some answers and help.
     
  3. AnnieO

    AnnieO Shooting from the Hip

    I'm glad you're back! And I'm really, really glad this hospital seems to have a clue and is better set for reality.

    I needed that good news! Hugs for you, and Jess too...
     
  4. Hound dog

    Hound dog Nana's are Beautiful

    Umm, you might want to talk to staff, the hospital might have something special going on for halloween night. :) (usually they do something or other)

    I also hope this doctor can help.........or at least admit they don't understand it and be able to think outside the box to help. I am really thinking this is a neuro issue in some way.

    Hugs
     
  5. Mattsmom277

    Mattsmom277 Active Member

    Hoping this continues to be a positive step forward and that answers are on the horizon!
     
  6. TerryJ2

    TerryJ2 Well-Known Member

    Thank you for checking back with the update. I know what you mean about the nurse. I wish there were more nurses like that. :)
     
  7. TerryJ2

    TerryJ2 Well-Known Member

    P.S. I think a Medusa costume is a great idea. I think the nurses will get a kick out of it when you mention it to them. :)
     
  8. susiestar

    susiestar Roll With It

    They are doing a craft and trick or treating in a little bit. Jess can't, because she is on a video eeg, so she is stuck n the room. they are going to bring stuff to her though.

    Medusa was cool until they put the gauze/vetwrap on her head to keep the wires on. Now she looks like a mummy. I brought some sharpies and we are going to decorate in a bt.
     
  9. KTMom91

    KTMom91 Well-Known Member

    Sounds promising, Susie. Hope you and Jess can finally get some answers.
     
  10. buddy

    buddy New Member

    I was wondering about that. usually they wrap it an it looks like a wire ponytail! I love my pics of difficult child . even though it was for that, he was cute.
    His hospital for that too had a restaurant kind of service. we could order whatever using a menu and calling for a delivery. really strange and cool. Guess they are more customer focused these days, anything to make more money maybe? Whatever, when you are stuck like that it helps to have food to eat and not go broke.

    My difficult child was in for 3 days and so was the boy next to us. the more episodes, the faster she is likely to get out. Once they get stuff documented then they can let you go. So it is one of those weird times you want something not so great to happen quickly. Have you done this same test before? so she is already used to it. difficult child mostly didn't like the itchy feeling after a while. Does she get a couple of hours off video each day? our hospital did that. some of the monitors had battery packs and remote signal so they could go to a play room and still be on video and have recording.... maybe???

    I hope they get tons of info and fast. It would be so nice to offer her some relief and hope. My heart just hurts for her and for you to see your baby go thru this. she should be all about boys and breaking curfew at this point in life (kidding)!
     
  11. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Susie,
    I'm so glad this hospital is a much nicer place. Keeping you (and Jess) in my thoughts and prayers.
     
  12. keista

    keista New Member

    Suzie, sounds like it's going well. Glad to hear it.
     
  13. Liahona

    Liahona Guest

    I hope you find some answers here!:frenkenstein:
     
  14. Shari

    Shari IsItFridayYet?

    I've missed you! Glad things are progressing, and I hope they get answers!
     
  15. buddy

    buddy New Member

    How are things going????
     
  16. PatriotsGirl

    PatriotsGirl Guest

    Sounds like a great place!!! I remember how much we spent when difficult child was in for ten days - whew! Hugs and prayers for Jess!!
     
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