Sunday, November 6, 2011

Sunday in Toledo.

Wyatt's cultures grew positive overnight in both lumens of his central line, peripherally (in his blood) as well as in his urine. The PICU attending didn't start off the day well with us this morning, then eventually changed her story (or so she says) after talking with Dr. M, our palliative care doctor from home. But has yet to say a word to or even attempt to examine our son. That's listening with a stethoscope, feeling his belly or even acknowledging that he is in the room with a "hello," "hi" or even "hey." Not one doctor examined our child today. The nurses have been friendly and helpful for which I'm very thankful! This doctor made it clear her mission is to only get our son back "home" to our hospital and nothing more than that. I'm all for getting home to our "home away from home" (especially right now!), however it's not always a clear cut case of throwing antibiotics through this child's body and he gets better. We've seen her twice this morning, once as the nurse pulled her into our room and another after talking with Dr. M who helped to change her outlook on the situation. Though, she may have said her thoughts have changed she didn't follow through. We mentioned to her a couple things we noticed, note worthy concerns, and she looked our direction and asked "What do you want me to do?" At that point in time I very much wanted to respond "Your job." It's one thing to ask what we typically do in this situation and ask how our doctors at home treat such an issue, but it was clear she wasn't referring to those thoughtful questions.

I've been trying to give her the benefit of the doubt (really, I have!)...thinking she just doesn't know what to do and/or she doesn't have experience with the complex nature of Mitochondrial disease, but thinking back on the day it's very hard to believe she's that clueless. Maybe she doesn't know what to do. Fine. But must she act as if she doesn't have a care?

I'm not even sure where to start with explaining how Wyatt's doing. He's sick. It's clear he's sick. He looks it and is acting it. His body is swollen and some areas have continued to swell more throughout the day. His eyes puffy and tears continue streaming down his cheeks. He's hurting badly and has vomited/retched on and off throughout the day. Fever still present, but we have gotten it to break for periods of time. Otherwise, he has two antibiotics running and an antifungal for full coverage. We're (not so patiently) waiting for specifics of what bug he's growing and the susceptibilities. I believe once we get a name and started on the best drug for treatment then we'll be able to come up with a plan to get us to our "home away from home". We really hope it's soon! Thank you to all who have been praying and sending positive thoughts in our direction during our trip and now during the medical detour through Toledo.

Something I haven't had the chance to share (and you're seeing pictures of  now)...prior to the detour, after seeing Mount Rushmore we took our trip a little farther west to Wyatt's second wish - to see "the big geyser," Old Faithful. As Wyatt slept and rested after the exciting day of seeing his first wish, Mount Rushmore, we drove to Yellowstone National Park. Wednesday morning we watched as Old Faithful erupted high into the sky. Wyatt enjoyed it very much, as did we all. It's a moment I will never forget, seeing the slight smile emerge on Wyatt's face and hearing him softly say "cooool" as he watched. We spent the rest of the day driving around to different areas enjoying the fresh blanket of snow covering the park as steam rose from geysers and hot springs, spotting animals of many kinds and taking in the breathtaking scenery.

I'm so happy we did take this trip and thankful to all that helped us make it happen...even if we are currently sitting in Toledo Children's Hospital.
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1 comment:

  1. Oh, man that is NOT fair. I am praying for you and Wyatt and your family. I am praying that this Dr. changes the way that she is treating you guys :(