Friday, June 7, 2013

How is Wyatt?

How is Wyatt? - At the moment that could be the most complex question you could ask me. "I don't know" is a phrase that has been said a lot the last few weeks, by myself and the medical professionals. It's been mostly in regard to what direction to go, what to do for him next, what may or may not work. But I've also used that phrase to answer the question that many have been asking me, "How is Wyatt?" Some days I just don't know. I do realize it's not a good response, but there are days I struggle with the words to explain it further. But thank you for caring and checking in! I do apologize if you've received a vague response from me lately.

This week the music therapist commented she was working 'outside her box' on a project for Wy, which I pointed out was rather fitting to our style. We've never been an 'in the box' kinda family - nothing Wyatt does is ever close to being inside a "box"! How could you possibly contain all this super awesomeness inside a box...?! ;-)

So, how's he really doing...well, we're taking it one day at a time. It feels much like treading water some days, just trying to keep all our heads above the water. We have had a new plan or made changes to an existing plan every day this week. We increased his Methadone doses twice, as well as adjusted his Fentanyl two times since I've last updated. Knowing we're coming down to some of our last options for pain control is a daunting thought. We also added broad spectrum antibiotics this week because the blood cultures did grow something. The king of sleep is still very sleepy. He's been sleeping 22-24hrs a day these days. But since making the most recent changes to his pain medicine he seems more comfortable. And during the brief moments we see him awake I've even seen a smile here and there.

I'm feeling more hopeful this week. Possibly it is a hope fueled by my lingering doubt. But it's hope, none the less. Anything is possible.

And today is the last day of the school year for these two girlies! They were happy as they boarded the school bus this morning. In her excitement for summer break, Jilly said she can't wait to be able to "sleep in" tomorrow morning. Maggie then pointed out it was Saturday and she would have been able to sleep in anyway. My guess is she'll be wide awake by 7am...

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  1. I'll miss seeing the girls at the bus stop. I was thrilled to hear Dr. Evans will be going to 2nd along with Jilly! I often wonder how Wyatt is doing. Even though I catch up reading your blog, I see Bryan and I just want to ask-"How's Wyatt today?" I think it somehow feels like I'm reaching out to you and the family. Don't be too worried about your responses to people. They get it as much as anyone can. And I don't think there's ever a good answer to that question no matter who you are :-).
    But it's like that song by Louie Armstrong-"I see friends shaking hands, saying 'How do you do?', they're really sayin' 'I love you'." We can't help it! Love your neighbor, as yourself-Jesus told us to!!!!

  2. I agree with not worrying about your response. You know so many people care no matter what. Wyatt is always in our family's thoughts and prayers.