Friday, October 8, 2010

Update from the boy's bedside...

Wyatt will be taking a trip downstairs to have a PICC line placed this morning. He'll also have another dye study through his gj-tube to make sure that it's placed where it's supposed to be. We checked it last week and they did an x-ray yesterday to see where it's at again, but they want to double check and make sure there are no leaks.

That's all of the plan that we are aware of at this point. We should be seeing his regular neuro today or at least over the weekend, as he's working the floor. We have yet to see the GI team this mornng. After the doctors reviewing the testing results from Atlanta, we have been told that Wyatt does have Mitochondrial Disease, complex I. This has been suspected for a lot of years, so it doesn't come as too much of a surprise to us, but we are still taking the time to process and adjust to having this new "label".

Like I mentioned, his GI doctor is working quickly to get an appointment for Wyatt in Boston to see the motility specialist, Dr. F. He is aware of Wyatt and his current status. And has requested that a central line be placed and he be nutritionally stable before traveling to see him. This was also in agreement with his neurologist and his current GI doctor's reccomendations. So, we are moving forward with a PICC line for now and if needed will place a port/broviac when the time comes.

It's a new day, a new adventure.
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3 comments:

  1. Thank you for updating. I'm so sorry that he needs to have a central line, but really happy that he will at least be getting some better nutrition. I hope the central line thing is temporary. Hugs for you and your little man!

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  2. (((hugs Wyatt))) Poor kiddo, sorry he's struggling with his GI stuff right now. I pray the line wont need to be in long. Hugs and continued prayers--
    Heidi & Jack.

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  3. I am glad that you all finally got confirmation on the test results. I hope that they can stabilize Wyatt nutritionally and you can get in to Boston quickly.

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