Sunday, January 8, 2012

Never Lose Hope.

This week has been full of emotion for me, not much unlike other weeks recently, I guess. But this week seemed a little more poignant. Since my last actual update on Wyatt we've had positive improvements, concerning sights and areas that continue to leave us feeling weary.

Positive improvements- we started Omegaven December 23rd. Since that day Wyatt's billirubin levels have dropped a great deal. The whites of his eyes have lightened up, his skin no longer yellow or green. There is no denying he looks so different than he did just a couple weeks ago. A good...no, make that a great change!

Concerning sights- his distending belly has been getting fuller and larger recently. We're unsure the reason behind the expanding belly, but it certainly looks uncomfortable. I did make the much needed shopping trip for all new clothing to accommodate the change. If nothing else, the boy now has new clothes to wear.

The part that leaves me feeling weary- pain control. Need I say more? This part is difficult. Where is it coming from, why is it there, what can we do to make it stop...if nothing, then what can we do to make it better? This week left me feeling as though one of my worst fears that I've always had for my son could very well be unraveling right before our eyes. We have nothing to take away his pain. At times it feels untouchable. There may be nothing worse than holding your child as they cry for hours feeling pain and knowing there is nothing you can do to help them. We've tried every option in the book to help ease his pain over the years. Hugging and comforting, warm and cold packs, massive amounts of distraction, massage, special oils and lotions, stretching, being stern and/or frank with him, ignoring his complaints, capturing his pain on video to show doctors exactly what he's doing and hoping they see something that we're missing, entering every combination of words that I can think of into google - hoping it may lead us to a new suggestion, talking with other parents, praying and when all else fails crying with him because that's all that's left. Recently, the narcotics that work the best cause more, or worse problems. Or are not even available in this country. The one thing we have always strived to do was find something, someone to help us help him with the pain. I've always felt while it may not be possible to stop what's happening to his body, the result, pain, we can do something about. It really hurts coming to the realization there truly may be nothing effective we can do.

So, while the end of this first week of 2012 left me feeling broken and my tears plenty. The words "Never Lose Hope" kept popping into my mind, much like a whisper in my ear.
  
Never Lose Hope. Powerful words they are. 
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1 comment:

  1. Probably you are already long-familiar with this, but the tummy and pain issues you spoke of are something that were also talked about on this blog:

    http://michelleagnew.blogspot.com/

    I think there were several posts along those lines at the end of 2010 and beginning of 2011. Was just hoping that, maybe, something that they tried might help bring relief to Wyatt. Even things that didn't work in Maggie's case...might in yours? Please, God!

    You are right. Never Lose Hope.

    Praying for you and thinking of you here,

    Cathy in Missouri

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