Friday, September 20, 2013

Dear God.

This short clip that I found on my phone is of Wyatt praying. I took this video as he was saying prayers before he went to sleep for the night, it was shortly after we came home from the hospital for the last time in June 2012. I miss hearing his voice. I remember that night he kept thinking of more things to pray for and he'd start each thought like he did this one, with a confident, trusting tone.

Tuesday evening marked three weeks. It's difficult to understand how he's able to keep going, but he is. I feel I can only be thankful for being able to still reach out to touch him and hold his hand and I don't necessarily have to understand the how of it. But the emotional piece of watching the slow deterioration is really hard too. He seems comfortable, I think. 'The king of sleep', as we so affectionately refer to him, is doing what he does, sleeps; and that's okay now. He's unable to talk anymore, he very rarely is awake or able to open his eyes, he's unable to move his body...all of his energy is focused on continuing to breathe. I do think he can hear us when we talk to him sometimes. His O2 sats are beginning to drift lower for longer stretches some days...they sit within a wide range, anywhere from a low of 50 to a brief moment at 90. The numbers are always changing depending on his breathing pattern. He will take 2 - 3 breaths and stop for a period of time...when he stops his numbers drop quickly. They will then climb a few points before dropping again. His CO2 levels are rising each week in response to his weakened respiratory effort. We did make another decrease to his TPN last week and we increased his Lasix dose again this week to help pull more fluid from his lungs. We also adjusted his phenobarb and valium doses since my last update. Decreasing his TPN (fluid) has been hard for me, I can't look at the (now) small bag of fluid without tears stinging my eyes. But these are all things we are doing to keep him comfortable as things change.

SuperWy is indeed super. I don't know how he's doing it, guys. But he is. And it's amazing.

Thank you for the messages, emails and support. As well as the prayers and love that we feel. Thank you to those of you who have been sharing the video for awareness week. Wyatt would be happy about that- I know. He's always told us he wanted to make a difference or "make a change", as he would say.
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  1. It is simply amazing. I pray that he's comfortable and not in pain. He is such a special guy. I bet you miss his voice and communication. But rest assured he loves you all and if he could say it he would. Hugs and wishes.

  2. SuperWy truly has a Superfamily by his side on his journey through life. I'm sure he is feeling very loved now (as always) as you walk this part of it by his side. Tell Wyatt he has made a difference to many people he has never met. You all continue to inspire me. Sending hugs and prayers.

  3. Sitting in
    the dark
    in Missouri
    thinking of

    you ~ Wyatt

    Every night
    thinking of


    Hebrews 13:14

    Looking ahead
    knowing that
    we will
    be There

    someday and


    aching heart


    None of you are forgotten here.
    Not a one.

    xoxo CiM