Still At the Hospital

Discussion in 'The Watercooler' started by susiestar, Nov 3, 2011.

  1. susiestar

    susiestar Roll With It

    We are still at the hospital. I am getting ready to go to sleep after being up all night with Jess. It wasn't too bad because I slept all of yesterday with a migraine.

    They told us it was very rare for anyone to stay the whole 5 days. We go home tomorrow. Of course we are the rarity. Jess has had one time when her legs spasmed and pulled up tight and she had to force them to straighten. I made her wait until the doctor on call saw what they were doing. doctor on call seemed very young but said it was the "freakiest" thing she had ever seen.

    That was NOT reassuring.

    The wires and the hat holding them on came loose yesterday. The eeg tech on duty tried to chew us out for it. I ahve no patience for that. Jess did NOTHING wrong. Tech said that it all happened because J pushed the chin strap off her chin. Gee, it left deep red marks on her face so she ASKED the nurse if she could. Jess even waited until the nurse came back after asking the doctor if it was okay. Then tech got mad because J was sleeping with covers on. Wanted to gripe at me because she was sure I "knew better" and was keeping the room cold for MY comfort. Hah! She was informed, rather curtly, that hte temp was ALL up to Jess and I had not even touched it. She was also told that she could be grumpy elsewhere but we would NOT be treated rudely. I suggested that maybe these rules, like no covers etc.... be written down because the tech who put the wires on and started the eeg said NOTHING at all about this.

    Jess is trying hard to not sleep, hoping that it will trigger something. It is hard iwth nothing to do but stay in a room for a week. Other than a really strange period about 4 am where she was pacing, walking nonstop, could NOT sit still or even walk with-o having her arms moving around not flapping but wiggling and fidgeting, we have had NOTHING that I can pinpoint. I am betting that with-in 12 hrs of going home she freezes and her whole body freaks out. Which will drive me nuts. I swear she is a toaster. They NEVER have problems when the repair person is looking at them!!!

    This will sound strange, but PLEASE send board mojo and prayers that she has the all body spasms, her head pulls to the side and all muscles pull her body in odd ways, and that she also, separately, has at least one freezing spell. ALL before we go home tomorrow.

    I really did NOT want to start neurontin 3 weeks before this test. But the doctor insisted, and it seems to be taking care of the absence seizures. So the doctor isn't seeing them, sigh.

  2. Hound dog

    Hound dog Nana's are Beautiful

    It doesn't sound freaky that you want what you see happen at home to happen there so that the professional see what you see.

    I've already been praying hard they will. I went through that docs needing to see symptoms so much with Travis that I know exactly what you mean. Hate to see Jess go through it, but yeah.

    That getting up walking around fidgeting arm waving flapping thing makes me wonder if the behavior was seizure related. I can say that because Travis has had some off the wall omg that was a seizure?? behaviors that totally blew me away. And he did do that one, repeatedly. What made me pay attention was the walking part, when ticcing like that with excitement or whatever he bounced or hopped around, he never walked or paced.

  3. AnnieO

    AnnieO Shooting from the Hip

    :hugs: for both of you.

    I hope, hope, HOPE her body starts to cooperate. And they DO know she is on neurontin, right???
  4. Steely

    Steely Active Member

    Definitely praying for you guys...
  5. Liahona

    Liahona Guest

    Hoping and praying for the doctor to see what is wrong. That is so frustrating.
  6. susiestar

    susiestar Roll With It

    Yes, they are giving her the neurontin. the doctor who rx'd it is the one who ordered the tests. He is the only doctor in the STATE who can order an eeg more than about an hour. This hospital will only accept orders from him because many past problems from other neuros who have done it for no real reason. Plus he helped fund the equipment to do the testing. No other hospital will even do it, not even the other kids' hospital.

    I was sort of wondering if it was seizure related because it is so unusual for Jess. husband says he has seen it sometimes and he thought it was out of character for her but didn't bother to mention it or write it down in the log I keep.

    Just FYI, husband told me we still have no internet at home, and the tech says it will be Tues before it is up. So I will post tomorrow and then won't until sometime Tues. Seems there is some problem in the line to our end of our street. But, the guy gave us a BIG credit that will pay the phone and the internet through the end of the year because all the problems. Plus the guy was able to adjust the bill so it will be about half of what it has been and still will be fast.
  7. klmno

    klmno Active Member

    This goes Wayyyy over my head so I don't know what to say other than to let you know that you and J are still in my thoughts and I'm reading to keep in touch with how things are going. You have my support, as always.
  8. keista

    keista New Member

    Praying, hoping, pretzeling and rattling beads that she has a "freeze" before you leave.
  9. InsaneCdn

    InsaneCdn Well-Known Member


    I'm just hoping that this isn't something with an environmental trigger... for example, something at home that isn't at the hospital.
    If nothing happens in the hospital, and then something happens after she gets home, it might be a possibility.

    These are really hard to find, because there are SO many possibilities.
    (you've probably already gone through all this, but... just in case...)
  10. HaoZi

    HaoZi Guest

    Hope they find some answers for y'all.
  11. buddy

    buddy New Member

    Oh gosh, I am sorry they haven't caught a spell yet. I will send that mojo your way. Has she ever done an eeg at home? They can have her all hooked up and have a remote box that collects data. Each time you have an event same as in hospital, you push the button to mark it and write it on a paper log. It is a thought if this doesn't do it. All is not lost.

    I hope they find something, that she and you both get some sleep after this is over. Sending love...
  12. mstang67chic

    mstang67chic Going Green

    Odd as it is to's hoping everything happens! Hugs to you both.
  13. mstang67chic

    mstang67chic Going Green

    Not odd that I don't get it, I do. Just odd that I'm wishing for it, you know? LOL
  14. susiestar

    susiestar Roll With It

    Thanks all! I do understand, truly. My mom came to visit tonight and we had a good talk. We snuck a few min away from Jess, which we don't get often because Jess is usuallyt here when I am with my mom. I let her know a few things that were going on that I jsut didn't want to talk about with Jess. Like the fact that if we had done what the last neuro wanted with tylenol then we might be looking at severe liver damage or a transplant by now - 8 extra strength tylenol per day for 18 mos was just not happening. Mom again offered to pay for us to go to any hospital that we thought could/would take a comprehensive look at things. I would take her up on it, but so far a couple have reviewed her records and said they wouldn't do much that we are not doing.

    The last eeg tech gave me the names of some docs that might be a big help if the neuro isn't able to help. I just wrote down some of my recipes for her as a thank you (she had to redo ALL of the leads on J's head because the cord got twisted and pulled them loose, so we had lots of time to talk).

    Anyway, thanks all!
  15. buddy

    buddy New Member

    poor kid getting those stuck on over and over....she is going to LOVE her first shower after this!!! get the stinky goo out. Lovely that your mom offered to help. I hope that this neuro will be able to help but nice to know you have options. This is no life for a kid!