Tuesday, June 5, 2012

Please pray.

I was hoping that I could come here and tell you of another great turn around in our boy. But unfortunately, I can not today. Wyatt continues on the path of decline and we don't really know why. He has fluid in his lungs, making it difficult to breath. His most recent x-ray shows another "possible pneumonia" and or atelectasis. We've run through back to back courses of ceftriaxone, levaquin and are starting a third round with azithromycin. And we increased his lasix last week, hoping to pull off the extra fluid that is hiding out. It could solely be "disease progression", though I'm not entirely convinced. Certainly it's probable that the mitochondrial disease itself has progressed, but we feel as if something triggered it to do so so rapidly. His hands and feet are at times as cold as ice packs and discolored. His voice soft and sometimes only a faint whisper is able to emerge. He hurts and has been sleeping for long periods of time. He has no memory and is confused, but is mild and sweet as can be. He's a very sick little boy. Friends, please continue to pray with us...for us.

I woke Saturday morning with a feeling of panic in my heart. There is so much I want to do with him, to show, to teach him. "Not yet. I'm not ready for this yet.", I keep thinking. We took family pictures that afternoon...I will never have enough pictures. And I'm glad we did, because Sunday he was struggling more and wouldn't have tolerated the few steps out onto our front porch as well as he did that day. We were even able to catch his smile in a few of the pictures, which isn't in abundance of late and makes those pictures perfect.

We're at home, not in the hospital. Wyatt wants to be at home. And we're equipped to do everything here that they would be doing for him there. I may feel more comfortable to be in the "safety" of our little corner of the hospital, his doctors near and other eyes watching him closely. But is not what our sweet boy wants.

I can't fully wrap my head around what's happening right now. Partly because we don't know what's happening. The thought that keeps coming back to me within the last week has been, "We're losing him." This has been my biggest fear within the last 10 years. And here I am, holding his hand and watching it unfold. Though, I keep thinking back to last fall when we were in a similar position, "We've done it once, we can do it again!" But I know his body is not functioning the same as it was even 7 months ago.

We saw Wy's favorite guy at the hospital yesterday, Dr. R. And as he entered the room and sat on his little chair with wheels, Wyatt slowly turned his head in his direction and whispered "I don't feel good." We looked at labs, at his x-ray, brainstorming things that could be happening to cause what we're seeing. Months ago I never thought we'd ever wish for an infection that could be treated, until now. How things have changed...


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7 comments:

  1. Ashley, i am so sorry.....thank you for taking precious time to keep us all informed, we give you back our continued prayers....know this is a constant. Love to you

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  2. Ashely, I am so heartbroken. I am praying that he can turn around. I am praying for his comfort and your peace.

    Lisa Scruggs

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  3. I am praying for you! Praying for Wyatt to feel better and for peace for you.

    Ali

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  4. So many prayers for Wyatt and your family.

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  5. You are so brave and so is Wyatt. I pray the Lord's peace would cover you as you reach for answers. I hope for the best for you and your dear son! You are doing all you can. God is wlth you, loving mother!!!!!!

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  6. “No one but Night, with tears on her dark face, watches beside me in this windy place.”

    ― Edna St. Vincent Millay

    *****

    This quote keeps coming to mind when I think of where you all are forced to live, what you are all going through.

    I know, with you, that Night isn't the only one watching. God is with us. But the dark can still get pretty dark. It feels like the kind of watching Jesus was doing in Gethsemane.

    Hard, hard beyond words.

    I am thinking of you and praying for you and wishing with all my heart...

    You are not forgotten, never,

    Cathy in Missouri

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