Here’s what happened at @AkronChildrens today

We ended up not seeing the doctor we thought we were supposed to and while we were initially thrown off at first, we really like the new one..

There was a great deal of information but I’m going to make this as quick and concise as possible.

Basically, there are at least a few tests that need to be done but there are some complications.

We don’t really know anything until this testing gets done. Unfortunately, because of Gavin’s immunological problems, specifically the Neutrophilia, there’s a significant increase in risk of infection from the procedure and until that’s resolved, they won’t do it.

If he was having life threatening gastro issues, they would do it immediately and regardless of his ANC. She explained that what Gavin’s needs is semi-elective at this point and therefore not worth the risk.

Gavin needs scoped from both ends, as well as a swallow study but until we get his ANC back up, we can’t do anything. She’s sending us to Hematology in order to get this all figured out. We’re waiting on a call to make an appointment.

Between Immunology and Hematology, we’re hoping to get to the bottom of the Neutrophilia related issues.

We also learned that Gavin has lost almost 20 lbs in the last couple of months and that’s very concerning. The weightloss isn’t obvious because he always wears big, baggy sweatshirts. He never wears shorts or short sleeve shirts either. We’re not sure what’s going on here either.

For the moment, she’s doubling his current antacid and we’re supplementing his diet with three Boosts a day. Thankfully, all should be covered by insurance.

Something else we learned for the first time is that Gavin’s struggling to swallow his food. He’s never told us that and that’s concerning as well. That’s what triggered the swallow study.

While we were talking to the doctor, Gavin’s giving conflicting and inaccurate information. It created some confusion and made things more complicated than they really needed to be.

He did the best he could and was very polite with the doctor. She was very good with him as well.. ☺

When it comes down to it, we basically don’t know anything more than we went in with, at least until further testing is done.

I held off on Gavin’s blood work this week because I suspected they were going to want some as well. Rather than have him go through that twice, I figured we’d stop on the way home and take care of both labs.

Traffic and construction was a bitch on the way home. It was much worse trying to leave Akron, than coming into Akron..

I’m grateful that there isn’t any obvious bad news. I grateful that his new doctor is awesome as well..

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)


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It’s always nice to find a competent and helpful doctor.