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70Re: [Parenting Children with Moyamoya] charlie's surgery

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  • dareinhart@yahoo.com
    Jun 9, 2002
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      --- mikeiz12 <no_reply@yahoogroups.com> wrote:
      > My son Charlie is having surgery on July 15 with Dr.
      > Scott. Any
      > advice about things to know or bring to the
      > hospitol?
      > thanks, Sheila
      > Hi, Sheila. My daughter also had surgery with Dr.
      Scott. The first few days after she really had no
      interest in anything. I had brought lots of presents
      and she'd open them but didn't have much energy to
      play with them.

      You should prepare yourself for Charlie to really look
      bad after surgery. My daughter's one eye was swollen
      shut and her head was huge. It seemed like it was
      getting better and then it swelled more. There's also
      lots of tubes and monitors in the ICU, it's scarey and
      comforting at the same time.

      The folks at Boston Children's are fabulous, they
      really know how to take care of moyamoya kids.

      They have a liaison nurse who will update you every 90
      minutes during the surgery. You check in with her
      once you get to the waiting room. If you need to
      leave, you can ask her for a pager so they'll be able
      to get in touch with you.

      Also, my daughter wouldn't eat for a couple of days
      after surgery. I realized it was because of the
      incisions on both sides of her head made it hard to
      open her mouth. We got her a soft cinnamon bun at Au
      Bon Pain and she was able to let it melt in her mouth
      without chewing. That really helped her to perk up a
      bit. She had surgery on Tuesday, was really still
      seeming very weak on Thursday. On Friday she woke up
      practically a different kid and on Saturday, when we
      were discharged, she skipped out of the hospital. It
      truly was a miracle.

      By the way, my daughter's birthday is July 15th, so
      that's an excellent day for your son to have his
      surgery, I just know it's a good luck sign. Also
      we'll be sure to remember to pray for him.

      If I can answer any more questions, just let me know.
      I know how scarey it is, but for us it was well worth
      it. My daughter is doing great and really leading a
      normal life.

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