Home from the sleep study.

The sleep study was . . .  interesting.

Parker was, once again, an amazing little trooper. He had 10 electrodes on his head. 4 on his face. 2 on his chest and 2 on his legs. He also had two things in his nose, an O2 monitor on his toe and 3 belts on his tummy and chest. And he actually slept, at least as well as he did at home.

Mommy, on the other hand, did very little sleeping. Once he got to sleep I peeked at the O2 monitor. My heart sank as his sats were ranging from 84-89 with rare spikes up to 91. This is, of course, not good. Obviously there are issues. Hopefully they will be easy to fix, like removing the tonsils to eliminate the snoring and apnea. Maybe it won’t be so simple. Now we just wait to hear back from ENT about the official results. I reminded them that we would be down there on the 6th for his hernia repair and that it sure would be nice to coordinate some things. One less trip is always nice. I know they will see what they can do, but I also know that is only a few days away and there are more urgent situations out there.

Here are some images of Parker at the sleep study:

parker2

“Nothing good can possibly come of hanging out in this room. Why do all those people in scrubs keep coming in and asking my mom the same questions over and over again. Doesn’t their computer tell them that I was born with paralyzed vocal cords and got a trach and that that trach came out last April when I had an LTP right here at Cincinnati Children’s? Sheesh. I’m getting bored of hearing that story over and over again!”

parker3

“What the heck is this thing in my nose? They said they were whiskers like  a cat but I think that was a ploy to let them shove this thing on my face.”

parker1

“No comment. I look and feel like a goofball and I’m sure my mom is going to plaster these all over the internet.”

We got to have dinner with Nathan. He is cute as a button. I was just flat out astounded at how amazing his voice is given the fact that he doesn’t have vocal cords and that he doesn’t wear a speaking valve. Kids never cease to amaze me. Unfortunately, Nathan had a cough and developed a fever overnight, so his surgery was postponed. It was a long drive to have dinner with us . . .

One of the hardest parts of this whole experience for me is the fact that we lose trach babies. Two weeks ago we lost Jonah. He was five years old and pulled his trach out in the night and by the time his parents got to him he was gone. It is hard to begin to fathom that life can change like that in an instant and yet it does.

Another little boy, Alize, has come home under palliative care. He’s battled and battled with shunt failure and now they’ve run out of places to place a shunt. His family is spending his last days by his side making every attempt to manage his pain.

We will let you know how next week’s spinal MRI goes.

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3 Responses to “Home from the sleep study.”


  1. 1 Roberta March 28, 2009 at 6:29 am

    Oh My Goodness Parker has sure grown up. He looks wonderful, all things considered. :o) That is the problem with the pictres that never change, we forget that the children do.

    Thanks for updating his place.

    Roberta

  2. 2 thai checel March 31, 2009 at 4:01 am

    Great photos! Parker is such a big boy. They ask you the same questions over an over again? I thought that was only us!

  3. 3 Amber April 4, 2009 at 6:38 pm

    I have to comment on the extra cuteness of his jammies! Ok.. I stopped the question thing… have you ever read Ky’s “Medical History” link on the blog? Its approaching 20 pages now and has all of her drs, diagnosis, surgeries, meds on the first page, and detailed summary of all visits on the subsequent ones. They open their mouths and I flop the book out… done!

    I was sick of it about two years ago! LOL

    When are you guys coming back? We have to be up in about two weeks for Uro stuff… hope we cross paths!


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