The Life-Threatening Reason Gavin’s Surgery was canceled (video)

As you likely already know, Gavin was scheduled for surgery at Akron Children's Hospital yesterday. Everything went as planned but we ran into a problem. I summed everything up in the video below because it was easier to talk about it than try to explain in writing. I'll quickly explain what happened before leaving you to the video for the details. Gavin's surgery was canceled at the very last minute and I mean that literally. He was just about to go into surgery when two issues came up. One was workable but one of them led to everything being canceled. The first issue was legal but more of an ethical concern than a legal one. While this did come up and I share this in the spirit of honesty, it's…

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Pre-testing at @AkronChildrens Hospital went better than expected

It's been a really long and emotional day. I wanted to quickly let you know how testing went this morning at Akron Children's Hospital. This was all in regards to the medically necessary procedures Gavin needs to have done on the 5th of June. We had been concerned about how he would react to learning what was going to be taking place. Gavin was never going to refuse anything but we were concerned that he would be freaked out after learning about what a colonoscopy and endoscopy are all about. There was never going to be a challenge gaining Gavin's cooperation because that's just how Gavin works. We were simply worried that he would panic and be freaked out for the next 5 days until he was scheduled for surgery.…

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@AkronChildrens Hospital called with a date for the procedure

I spoke last week about how Gavin is in need of an endoscopy and colonoscopy because of various potential health related problems in those areas. They needed to run labs to make sure that it would be safe for Gavin to have the procedures because Neutrophilia puts him at a much higher risk of infection. His labs came back and everything looked good. Now it was a matter of scheduling everything and waiting on the call to do so. I just got off the phone and we now have two dates. The first one is for pre-testing and that's with a nurse practitioner. My understanding is that we will basically go over everything and make a final determination as to whether or not it's safe to proceed with the procedures.…

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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…

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The last time we were here, we received devastating news

Today is going to be one of the biggest days we've had in awhile, at least as far as Gavin and his health are concerned. Gavin finally gets back into Gastroenterology. We've finally come full circle and I'll explain why. It's been awhile since he's been seen and that's only because we were basically overrun with unrelated, but life-threatening health issues that took priority. Gastroenterology was actually what began a huge part of our journey. We made it to one appointment and within a week of that appointment, the Gastroenterologist called, telling us we needed to get Gavin into Immunology immediately. In fact he'd already made the appointment for us. He's the one who discovered Gavin's severely compromised immune system. From there it was a diagnosis of Common Variable Immunodeficiency.…

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It’s likely nothing to worry about but there are two much more serious possibilities that he’s genetically tied to

I still haven't heard from the doctor as to what time Emmett's supposed to be seen in the morning. I'm supposed to call back if I don't hear from them before 9 AM. This should be a simple appointment and likely resulting in a referral to Gastroenterology at Akron Children's Hospital. The most important thing at this moment is ensuring that there are no life threats or serious issues that need to be addressed. I don't think there are but we want to error on the side of caution because what parent wouldn't. Once we get to that point, we will likely get an appointment with Gastroenterology at Akron Children's Hospital. There are a couple things that we are going to need to rule out, and they are more serious…

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