Saturday, December 24, 2011

The night before.

The night before Christmas. The kids are filled with excitement and fitting in their last good deeds to ensure they are noticed. Wyatt has been looking well the past few days, I do believe the holiday spirit has filled him completely! He's been smiling, interactive and has been distractable from his pain. Though today, while still excited that Christmas is tomorrow, he's more on edge and not feeling as "perky" or as distractable as he was.

I feel like a lot has changed since I posted earlier in the week. Thursday we met with the docs while they decided what meds to start, stop and change, adding in our parental opinion when needed. Lots of changes being made recently...I'll go into more details on that at another time. As I mentioned, the past couple of days we've been riding the high of a boy who has been smiling. An awesome thing to see! Last night he woke up due to the "bad dreams" less than he has in what feels like a very long time. I have renewed hope...maybe we will be able to find a way to get him comfortable with sleeping again!


The same afternoon we were seeing the docs we also picked up boxes of Omegaven. A fatty acid supplement made with fish oils that will be given in place of the intralipids that Wyatt has been receiving. Our hope is that this mixture will improve our boy's liver in one way or another. Its the only option left. An interesting tidbit to the case, Wyatt is starting this "compassionate use" FDA trial at home. Which is not how it would typically be handled. We were originally told that he'd need to be admitted for several days while we began the treatment. But those that were involved and part of Wyatt's team agreed to allow us to start it at home, with the condition that we draw Wyatt's labs and transport them to the hospital daily for the next week. And should anything happen we will contact Dr. R and or take him to the hospital. A plan that is certainly doable!

A wish come true...one more Christmas morning. It's a very merry Christmas, my friends!

Happy Holidays!
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1 comment:

  1. I recently spoke of your children as an example of what beautiful, life-giving love looks like - even in the midst of severe suffering. As I "see" them interact in pictures, I think how much better the world would be...if only more people had the perspective that they so obviously do. They are lovely to behold, and their care for each other shines.

    Still praying for you, as the suffering continues. How I wish it did not, and that relief and rest would come, instead.

    Thinking of you and your Wyatt,

    Cathy in Missouri

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