Friday, February 24, 2012

A more thorough update.

 As promised, a more thorough update of the last few weeks...

Wyatt's been keeping us on our toes with several new, colorful issues recently. The boy's body appears to be stressed. He's tired and not sleeping well. At times he's very pale and the circles beneath his eyes have grown. The circulation of blood throughout his body is proving to be difficult for him to keep up with these days, creating drastic color changes in different areas...purple, blue, grey. We've seen a little of this before, his circulation has never been perfect, but not to this extent. Earlier in the week he began to drain a very interesting, dark purple colored bile from his J-tube, as well. I'm not sure what to make of it, but it's since stopped and we're back to the usual brown/coffee colored stuff that we're used to. He has also begun to experience issues with his supra pubic catheter and/or bladder that we're currently trying to sort out with his urology team. Our go to doc, Dr. R, is currently out of the country, sharing his medical knowledge else where. Which is a wonderful thing that he does, but right now we're missing that knowledge and looking forward to his return! 

We recently purchased a new seating system for Wy, the Special Tomato Soft Touch Sitter with mobile base. A similar brand and set up was originally ordered for him and processed through our medical insurance but was denied. While we could have appealed repeatedly and "fought" for what our son needed, we knew it would likely take months. Time that could very possibly not be on our side. The week I was talking with our DME about the insurance denial was the week that Wyatt was feeling so good, which was a bit frustrating knowing he could be greatly benefiting from this seating system now.

I then hit the Internet looking for prices, sales, discounts, comparing brands. I found the Special Tomato seating system on sale with a discount and a few days later it arrived to our door. We are so incredibly pleased that we purchased this chair when we did. It's perfect for our boy and his current supportive needs. His feet touch the ground when sitting in the chair with the mobile base, allowing him the chance to slightly push and move himself with his own power. Of course, he's still "tied down" with the multiple IV lines and tubes, unfortunately his equipment doesn't fit on the chair with him. But it's motivating for him to feel and see that he can still move himself in one way or another.

What makes this system even better...the seat itself can be removed from the base and used in a variety of ways. (Forgive me for sounding like an advertisement!) We found it works well on our dining room chairs. And this week, I remembered the net-swing that we bought many years ago. Specifically for the purpose of giving "Mr. Sensory Seeker" (Wyatt) an appropriate outlet for sensory feedback when he was a toddler. All three of the kids enjoyed this swing incredibly in their toddler years. So in a spur of the moment inspired thought, I hung it up, lowered the chain and placed Wyatt's special tomato seat in it. It works perfectly!

Wyatt's able to push himself with his feet and swing gently, providing him another comfy spot in our home and the ability to move his body with his own strength in another way.

So, while we are juggling concerns and waiting for the doctors return, we've been "making it work," words that describe my feeling about our life the last several months. We've been given this beautiful family, this wonderful's up to us to make it work. Being happy and grateful to be living life, even within the constant medical chaos.
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