Sleep Study – Round Two & EEG Results

by
‘Just a quick update…
Thanks so much for the many prayers for Rudy the past couple of days.  Rudy and I made it down to LA in record time yesterday and got settled in the sleep lab at Children’s Hospital with time to spare.  Although I tried to keep him up as long as possible, he conked out while I signed all the admitting paperwork and stayed fast asleep until they started to prep him for the study!!!  He fought the sleep lab techs and acted like a normal two year old!!!  Poor guy…there wasn’t a whole lot of sleeping going on in this sleep study.  The study ended around 6:30am and we were on the road by 7:30am.  I made one stop for breakfast and then hit quite a bit of traffic but we made it home in time for the SB Rescue Mission Auxiliary Annual Luncheon AND the Goleta Valley Jr. High Talent Show…a big day!!  It’ll take 2-3 weeks for us to get the results from Dr.Pornchai so we’ll keep you posted.

Getting a head start on the sleep part of the study at admit!

Yep, Rudy could not be distracted this time...and he was pretty uncomfortable all night!

Although a quick stop, it was fun to be in our old "hood".

While I was gone, Dr. Corazza called with the results of Monday’s EEG!!  (So fast).  I’ll let Rolf explain it as my brain is mush…  He described the results as “surprisingly normal” considering the seizure activity we were able to show him on video.  In reviewing the MRI imagery taken at UCLA back in February 09, he saw evidence of an acute stroke in the left occipital region (which deals with vision), along with overall brain atrophy which could be indication of earlier insults (the term used to describe episodes of low oxygen levels in the brain).  We’re aware that HLHS kids have smaller brains (which was confirmed in the CT scans at the ER) and we’re not sure if this is another way of expressing the “atrophy” observation.  Add that to the list of follow up questions as we get our crash course in neurology.  For now we’ll continue the Keppra for seizures, but we may want to run some chromosomal and genetic panels for the team to investigate further.  Not like any of this is particularly “new” information as we had some conversations on this before Rudy left the ICU, but having to revisit it in such detail makes it feel like a new issue.

It’s been mentioned that Keppra can make people irritable and this may be an unfair week to assess this, but our little warrior hasn’t been at his happiest.  He’s been junky from cold and the battery of medical episodes of the last two weeks have him a bit out of sorts.  Safe to say that extends to our whole family–in your mind, you realize that HLHS includes unforeseen events popping up, but it is a bit disorienting to have suddenly returned to “medical deployment mode”.  Here’s hoping things settle down a bit now…save for the monthly lab draw that awaits Rudy in the morning :-(.

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10 Responses to “Sleep Study – Round Two & EEG Results”

  1. Michele Says:

    May the Lord refresh you all, and set you in a wide space.

  2. Oma+Opa Says:

    What an overload you are all carrying in hte last two weeks.
    The Lords Blessings for you ALL and a few nights of good sleep !!!!

  3. Grandma Jo Says:

    Wish I could “fix it” with our little sweetheart and all of you. I am trying to be patient in determining what God has in mind for Rudy’s life. In any event, I know your family will stay the course. May your opportunities for rest be frequent.

  4. Uncle Steve Says:

    Thanks for the update Trish! Joining in your prayer that things would settle down for a bit. Of course “settling down” is a relative phrase when riding on the Rudycoaster! Blessings to everyone!

    PS – Whose talent was on display at the GVJH Talent Show and will we see pictures?!?!

  5. cici Says:

    I have to say I would be quite irritable with all those contraptions on me. Rudy is such a little trooper and one smile makes up for any grumpiness.
    Wish I could give him a big hug, but instead I will say a Prayer.

  6. Pat Says:

    Continued prayers for all of you. May you feel the peace of God as you go through these experiences.

  7. Jane and Joe Lynch Says:

    We’re holding all of you up in prayer!! God Bless!!

  8. Nate Says:

    Thanks for the update Trish and Rolf. We will keep praying for Rudy, his sibs and for you.

    Miss seeing you.

    Every blessing be yours.

  9. Grace and Marlin Says:

    Always in our prayers…loves, the Vans.

  10. Follow Up with Dr. Harake « Rudy’s Beat Says:

    […] get an accurate sleep study out of Rudy since he is at the age where he will fight it (as he did this last attempt in May)!  She said there are cases where she will go ahead and pull the trach without a sleep study.  […]

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