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WWYD?

realisticdreamsrealisticdreams member
in Special Needs

We are scheduled to be at VCU at 6am Wed morning for P's surgery.  We are allowed to check into the hospitality house Tuesday.  She is supposed to have a sleep deprived EEG Tuesday at 8am.

Pros-dh can go with me to the EEG

cons-I feel like it it will take a lot of of her before surgery

I'm afraid shes' going to be so traumatized from surgery  that if we try to do the EEG post-surgery it will be more of a nightmare then her normal EEG's are.  Her last was at 6 months & it was normal.  

She's been having lots of spasms and it's hard to differentiate if they are just CP related or something more.  

Also, if we do it post-surgery she will have to wait a while because I dont want her to hurt her incision thrashing around.

If we cancel it, I want to go down earlier on Tuesday & take her to the zoo/have fun before her surgery..

Would you postpone the EEG in order to give her one last 'fun' day before surgery?

 

DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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Re: WWYD?

  • MaxandRubyMaxandRuby member
    I probably wouldn't. If things are already scheduled, and the chances of the EEG being before the surgery also meaning less of a nightmare and you are already going to be there then I'd just get it done and over with. You can always have a super fun day after recovery. Could you maybe do something fun Monday instead?
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  • realisticdreamsrealisticdreams member

    imageMaxandRuby:
    I probably wouldn't. If things are already scheduled, and the chances of the EEG being before the surgery also meaning less of a nightmare and you are already going to be there then I'd just get it done and over with. You can always have a super fun day after recovery. Could you maybe do something fun Monday instead?

    No such luck, tomorrow she has ST at 11am & then we have a 3 hour meeting with the disability resource people about her waiver.   

    My main concern is that she will be sleep deprived & that it will make her weaker going into surgery, and us too.  If she's up all night, I will have to be too & just seems like a bad way to start off a 4-5 day hospital stay.

     

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • Lil KateLil Kate member
    I would have it done.  Maybe you can get something figured out as to why she is having the spasms.  Since it is already scheduled just set your mind that Monday is your last day before her medical things start. I wish you luck...I know it is not easy to have your LO go through all these procedures.  Hopefully they will figure somethign out.
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  • BUmamaBUmama

    What time is it scheduled for? If its in the morning, then no problem Let her have a nap and come down in the afternoon. Go to Maymont of the Children's Museum (our metro zoo is nothing to write home about and it's pretty far from VCU). Let her get good and tired and have a good nights sleep so that she's well rested for the surgery.

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  • carlinlpcarlinlp member
    I would reschedule it honestly. The body heals when it sleeps. Without sleep it can run down the endocrine system, adrenals and immune system. I'd say sleep is very important both before and after surgery.


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