A Whole New World

Wow… what a year.  What a roller coaster ride…

Let me start by saying… Dell Children’s Hospital is the place to be if you have a kind with anything.  The only thing that I can find any fault with at all if the sofa bed isn’t designed to be slept in… there is a wooden bar that separates the left and right side that (when it is pulled out into a bed) digs into your back and ribs really badly.  OH… and the internet is incredibly slow.

The people are wonderful.  The library is really diverse.  The DVDs that you can borrow are even new releases.  The teen room on 4 isn’t huge, but it has a juke box, a foozeball table and a boomerang air hockey table.

The cafeteria isn’t massive, but the food is good and not horribly priced.  I will be taking my kid down for breakfast in a couple hours… they will give me a voucher for her so she can escape her room.  But the room service that they gave her to order from whenever she feels like it, whatever she feels like eating… you can’t complain.

Last night, at 10:00 she finally went down for her MRI.

The neurologist didn’t seem to think the EEG was going to show anything… at least that is the way he let on to me when we talked night before last.  Trouble was… it did.  Abnormal spiky and slow rhythms in the back right hemisphere.  Could just be the way she is wired.  Could be malformed blood vessels.  Could be a tumor.  Could be scar tissue.  We weren’t leaving the hospital until an MRI was done.  Yesterday was a busy day at the hospital… and the MRI was busy all day.  We spent another night in the hospital because we can’t leave until the MRI is read and interpreted by neurologist and we get a green light.

We started our anti seizure medicine last night, officially.  The loading dose apparently didn’t count… that was to just quiet whatever was going on with the back to back grand mals that she was having.

I’m stressing my mom…. 2000 miles away… because she can’t be here.

Me… I was up until after 11 last night and up at 4 this morning and up several times to check on her through the night.  I’m freezing.  My ankles and knuckles hurt.  Coffee is… icky, but it is keeping me going.  Yes, I’m eating… not because I feel like it but because everyone is making me eat.

Today, I have to call my Rheumy to change my appt for next week because she is going out of town.

By now, I should be getting a call from PCP on test results.

This morning… I totally regret being off the prednisone.

I was asked yesterday by most well meaning of relatives if I had contacted my support system.

I guess I answered her honestly… this is most of my support system… and you have been notified.

It is amazingly helpful to get messages back that I’ve struck a chord, or just a “hang in there”.  It helps so much…


2 responses to “A Whole New World

  1. So sorry to hear what’s happening. I hope they figure out what’s happening soon and can get a handle on it. In the meantime, try to stay warm and know we’re all thinking of you! 🙂 Laurie


  2. Oh my gosh. It sounds like Dell is a great place and you’re doing everything you can do. I can’t imagine how scared and overwhelmed you must be feeling right now. Know that we, your support group, do care. Hang in there and please keep us posted.


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