Friday, August 13, 2010

It takes a village....

What a day, what a day, what a day.

Yesterday Wyatt had an appointment with GI, Dr. M-R.

It was a long, thoughtful and productive appointment. Dr. M-R didn't have a patient waiting after us, so it was 'nice' to talk at length about everything. It's so much more helpful than being rushed through an appointment and left with the feeling of your head spinning atop your shoulders....it was nice.

An eye-opening talk in some ways for us.

We talked about W's elevated liver (and even kidney numbers that we weren't aware were elevated. No thanks to the urologist that we just saw 2 weeks ago!), his poor motility/absorption, the amount that we're draining from his stomach and how often...and most important in a lot of ways, his discomfort and pain. We talked briefly about TPN (total parenteral nutrition....nutrition/fluids that are administered through his veins, not GI tract). We don't feel we're exactly to the point that we need to move forward in that direction, but we know it's the only next step. For right now continuous j-tube feedings and draining from the g-tube is working "ok:". Certainly not perfect, not even great, but it's ok.

You know the saying "It takes a village to raise a child"? This saying popped into my head during our appointment, but modified slightly to fit the situation. "It takes a country to care for a child".

Dr. M-R brought up the idea of seeing a GI and motility 'expert'. Specifically, Dr. F in Boston, Mass.

Apparently, we don't live nearby any of the expert physicians that we're needing to see these days...Texas, Georgia, Massachusetts.

We expressed that we'd like to wait for the results from the testing that he had done in Atlanta before travelling to Boston. Not that those results are going to change anything, but the thought of travelling and planning an inpatient stay in another city, in a different state, before receiving those results, not to mention while the new school year is starting, makes me feel as if my heart will pound out of my chest. One step at a time, please! So, in the meantime Dr. M-R will be contacting Dr. F and relaying Wyatt's medical history to him while asking for his opinion.

We left the appointment with plenty of prescriptions for medication, some new and some old. The need for follow-up phone calls. Along with orders for blood work and a direct appointment for the lab.

There's a lot to think about after an appointment like that. One day at a time...one day at a time.

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On a more fun note...after the appointment we met up with the girls (and Grandma who was watching them) to go shopping for school supplies. Book bags, crayons, markers, folders, notebooks, pencils, pens, highlighters, erasers and more! I can't believe the summer is coming to an end and the start of a new school year is quickly approaching.

The kids are checking the mail each morning, eagerly waiting for the letters that will tell them who their teachers are for this year (while I'm checking the mail for a letter from Atlanta and Dr. S with test results...but that's besides the point).

Since this was typed on Wednesday (yes, I realize it's early Friday morning by now...I just couldn't get back to edit any earlier.), but hardly wordless, I will leave you with recent pictures of just a days worth of our summer fun (on a cooler summer day).
















































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