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Wednesday, June 8, 2011

Rough Night

We got KT back into her hospital bed about midnight-thirty after the TS Concert.  Her pain levels got pretty intense 3/4 of the way through the concert, so we came out to the car, and by the time we had her in the car she was just plain frantic.  She felt like she couldn't breathe, so we suctioned her, and she still signed "Call 911!," so we did an emergency trach change.  Even then, she grabbed my hands and placed them on her head, indicating she wanted a blessing, so I gave her one right then and there without oil.  It seemed to calm her down, and we got started on the 2-hour trip back to the hospital (the concert was in Columbus, and we're in Cincinnati). Mom sat with her in the back seat and held her hand the entire way home while we played Aunt Rache's balloon flight mediation over the car speakers.  KT tensed up with each bump in the road, and we weren't allowed to give her any more medication until 11:30 (we gave it early at 11:15 pm).

Despite the drama, we all feel it was still the right thing to do because it gave her something to work toward.  She loved the concert, but because of all the movement, she didn't sleep well all night (thus, neither did I).  But, it cleared out her lungs better than they've been since surgery!

We were going to be released today, but because of her pain levels through the night, they decided to keep her one more night - but they moved us to a different room that wasn't dedicated to kids with compromised airways.  We'll most definitely be discharged tomorrow (Thu) unless we decide to go with Dr. Gordon's suggestion that he do another 5-minute procedure to insert a plate above her top screws to give the lower expansion screws something more solid to work against, thus decreasing the pressure that seems to be causing all the pain.  He hasn't really explained it very well, and of course, KT is extremely contrary towards another surgery already.  But she is beginning to think it might be worth it, if she can get rid of these pain levels.

So, the saga continues.  Pam and I are wearing down a bit, just looking for some resolution to this constant tautness.  When KT's going through her severe pain bouts, she hangs onto our hands so tightly it hurts!  Thankfully, we're both here, though, and able to split the shifts.  Otherwise, it would never work.  It's very nice, too, to get good home-cooked meals provided at the Ronald McDonald House, and a nice place to stay for cheap.  They are a very wonderful charity!

1 comment:

  1. oh we are praying for you! the Lord will give you strength, I am so sorry this is so hard on the 3 of you. Sending all of our love!!