An afternoon update.

It’s been an interesting afternoon. Parker has essentially slept the entire time. The doctors assure us this is normal partially because your circadian rhythms are messed up after a week on sedation. And, partially because a week on sedation is really not restful sleep. The sedation meds don’t allow you to through all of the sleep cycles so really he hasn’t had “good” sleep in a week.

He also had a couple of really severe breathholding incidents. Let me give you an idea what happens: when Parker gets mad or hurt and we don’t get it headed off at the pass he holds his breath. He turns a deep purple and his arms and legs are stretched and stiff. His hands are curled up in tight fists and his toes are pointed and his eyes roll back in his head. After a few seconds like this, he passes out at which time his natural reflex to breath kicks in, he pinks up, wakes up, looks around, wonders what on earth is going on and goes about his day. We’ve learned at home how to mostly avoid triggering the episodes or stop them before they get too far in but we don’t always manage. They are scary, but the whole thing is over in less than 60 seconds so they have really become a part of life for us. We can weeks and not have one episode and then we will have three in one day. Mostly, we are just trying to keep him safe so he doesn’t fall down and get a collateral injury while he is “out.”

So, no surprise, he did this a few times here today. Because he is wearing a monitor that measures the saturation level of the oxygen in his blood we know that he de-saturated into the mid-thirties during this time. Normally, your oxygen level should be between 98-99. Obviously, too many of the episodes would be very dangerous to your organs, so we do have to monitor it.

The doctors are not particularly worried at this point, they (and we) would expect him to do this and we will just dial up his oxygen flow during the episodes. If they continue for days, we will start to get worried. One thing that will help is that we are going to start feeding him again soon. He is prone to more episodes when he is hungry, so I believe that will help out. Hopefully tomorrow he will wake up enough that we can even start giving him some sips of drink by mouth.

Last night we went out to dinner with Molly and her family. They are the family that is here from Indianapolis. They are a delightful family and Molly was a lot of fun. She taught us some new signs. I can’t remember if I mentioned it before, but Molly is going to be a big sister and I can tell by the gleam in her eye that she has much to teach her little brother.

We also finally got to meet up with Tommy’s family. He is every bit as adorable as his pictures and it was a treat to meet them. When we started down this path I had no idea the wonderful people we’d meet. The families who took time to answer our questions (and I have a lot of them), the families whose unconditional love for their children is inspiring, the doctors, the nurses, the kind strangers at the mall . . . we have been so lucky to have all of these people in our lives.

We are hoping for an easy re-introduction to food and an uneventful night and hopefully a Parker who is a little awake tomorrow. I promise to keep you posted.

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3 Responses to “An afternoon update.”


  1. 1 Lara (IsaacsMom) April 17, 2008 at 12:44 am

    I bet he’ll feel better when he gets some food in his tummy, what a redhead!

    Parker, a little message from your fellow red-haired friend Isaac, you gotta breathe little buddy! No holding your breath just b/c you are mad!!

    Lara

  2. 2 Lexi's Mom April 17, 2008 at 1:04 am

    Parker,

    You are in our prayers that you continue to do well without the trach. Hang in there mom and dad. Parker will lead the way and let you know how he is doing. We have a little bit of an idea what you are going through. Lexi has been trach free since November 12th. Dr. Rutter did her LTP and we have been on an amazing ride since.

    We’ll keep you and your family in our prayers.

    Love,

    The Martin’s from Nebraska

  3. 3 Margie April 17, 2008 at 10:23 am

    Good Morning,

    Hope that Parker and you had a RESTFUL night!! It sounds as if he is making the right progress!!! Look forward to today’s updates… Know you have lots of friends Praying and thinking about you guys…

    BIG BIG Hugs, M


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