Tuesday, May 11, 2010

Cleveland-day one

We are in Cleveland now and Emily is all hooked up to her eeg for the next few days. They want to see all the different types of seizures she has on the monitor so they may back off some of her meds temporarily and see what happens.
It is defiantly a different world here. Don't get me wrong it seems like a fantastic hospital and they have an amazing reputation for the most modern technology it's just not our little,everyone knows you, hospital.
The accommodations are a def lacking comparing to our home hospital. We have a very tiny room and we share a bathroom with another room. There is one shower on the unit and the door does not lock (ha!) Honestly I think we are just spoiled with what we are used to.
On a positive note, they left the hospital bed in the room so we have that to sleep on and a pull out chair/bed thing. The Ronald McDonald house is full so we could not get a room but they are letting both of us stay here so we don't need it now. They have a Ronald McDonald room on the floor for all the pediatric patients family's that has a couple computers, TVs, showers and laundry that we can use while we are here.
So enough with the complaining.....We met the neurologist up here and he is incredibly thorough, he knows his stuff. Joe and I were both very impressed. He agrees that something is going on with Emily's brain that is causing her problems, seizures, developmental delays, and low muscle tone, we just need to find what. He said he finds the cause in about 60-70% of cases but even if we find out what it is it may not change what we are doing. Finding a cause may just may be just that and not being able to fix anything.

That is pretty much whats going on so far, in the morning she has a PET scan done. Unfortunately, she has to be NPO (nothing to eat) after midnight and her test is not until 11am. I am freaking out a bit because I know she will be. We were 1 1/2 hours late feeding her earlier and you would have though I had not fed her all day! Also when she does not eat her blood sugar drops because of the diet she is on so we are going to have to watch the pretty closely. So needless to say I am a nervous wreck about this. She also has to be sedated for the test.
So tomorrow is going to be a long day. We also meet with the metabolic specialist tomorrow and they had me fill out a 10+ page packet to help them fill in on Emily. Maybe they will see something no one else has so far.
I will update sometime tomorrow.

4 comments:

  1. I have a very good feeling about all of this. I just KNOW that the Lord is healing Emily. I know all of the tests will come back with better results than we thought. I love my little family and I know that God will watch over you all while you are there in Cleveland. Tell them they'd better be good to my kids and grandbaby, they DONT want me to come up there!
    Grandma Mary Johnson

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  2. We'll pray today goes smoothly for Emily - that she wont even miss her feeding (did you just laugh?)...You & Joe hang in there - its gotta be hard being away from home in an unknown place & having less then what you're used to in conditions, but its just for a few more days... So thankful to God you are seeing doctors that are on top of their game with this! Can give you some sorta answers!!! BIG HUG friend! Love you!

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  3. Wishing and praying for answers and that your sweetie endures the tiring days ahead... (mommy and daddy too!)

    Hugs...

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  4. I'm praying for your family. I hope today is going ok for y'all.

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