Wednesday, November 15, 2017

Moving Towards Leaving

The tentative date we are now looking at for transitioning out of Blythedale is Wednesday November 22.  Byron is VERY eager to go home.  This date is two days after the final dose of steroids.  The steroids help prevent brain swelling and they stop on the 20th.  Then we will watch closely to make sure once the dose is down, that he is still fine.  But I still have some other concerns.

1) Fevers are still between 99 and 100.  This can be normal for 2-3 weeks although all kids don't get them.
2) Byron has started to have a lot of trouble sleeping.  For the last two nights he has not fallen asleep until 11:30 or so and is getting very cranky again.  He has been taking morning naps.  I really want to make sure he is sleeping before we go home.  The doctor told me this morning that it could be the steroids.

I called his neurologist today to see when we can get an EEG.  I really would like to see that the seizures truly have abated.  It may be too soon for the test but it would be great to get an early idea.  It would make me feel much more comfortable about the sleeplessness to know they were not seizure related.

Other than that Byron continues to heal well.  He's eating everything in sight which is not typical for him and everything else seems really good.  


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7 comments:

  1. crbaggottNovember 15, 2017 at 1:04 PM

    May your concerns be addressed in a timely manner Denise (and in a manner which will provide you with a peaceful heart and mind when taking Byron home). And may Byron continue to heal and have his sleep issues resolved. 💕

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  2. Janine St.GNovember 15, 2017 at 1:48 PM

    Denise, Just wanted to drop you a note to let you know I too have had Byron in my thoughts quite a bit -- cheering from the sidelines as they say.
    For what its worth... I do remember when I was in treatment, the steroids really did a number on my sleep patterns... up a lot through the night. As soon as I was off, I returned to a much better night's sleep.
    Sending you lots of love too Denise. xo Janine

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    Replies
    1. Denise Thomas PrattNovember 15, 2017 at 4:41 PM

      Thank you so much Janine! I just learned the same thing from Byron's epilepsy doctor at Columbia. Weird they didn't tell me this at Blythedale. Anyway very relied to know the cause.

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  3. ShreyaNovember 15, 2017 at 7:03 PM

    ❤️❤️❤️

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  4. Janine St.GNovember 16, 2017 at 8:56 AM

    Of course... have another thought to share if you can/want to chat off line : janinestg@gmail.com. :)

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  5. UnknownNovember 16, 2017 at 9:14 AM

    It's such good news to hear that the come home date is in sight. I hope all the concerns can be addressed soon and the way that saves you any worry. Sending you and yours much much love, Michele

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