I need to get you all caught up on Gavin's status and whether or not his scheduled surgery is a go for tomorrow. I couldn't really share anything until this afternoon because I didn't get the final word until a few hours ago.
There are three things that needed to be addressed before we could move forward with his surgery.
So we're on the same page, Gavin is scheduled for a colonoscopy and endoscopy. The doctors refer to it as surgery, I assume that's because of the biopsies but regardless, I'm keeping consistent with what terms his doctors and the hospital are using.
I should mention that part of the complication with this whole thing is Gavin's overall health. As a result, he can't have the procedures done the way they are normally done. He needs to be in the actual OR, with an anesthesiologist and support staff. This is in the event something happens.
The previous attempt had been canceled at the very last second. There were two reasons for that cancelation.
The first problem was that there were some legal concerns surrounding Gavin's particular situation and it was unique enough that no one really knew what to do. Gavin turned 18 but is not competent to make his own decisions in regards to anything major like medical related issues. Guardianship is taking longer than expected and therefore we found ourselves in murky water.
That was an obstacle but not the main reason for pulling the plug at the last second.
The main reason actually had to do with concerns over a Gavin's heart. During his surgical prep and exam, one of the doctors noticed some physical signs that indicated Gavin may have some cardiac and connective tissue problems.
These were already established concerns but they haven't been followed up on in awhile because there's been more pressing medical issue with him that have taken priority.
The doctor wanted Gavin to be cleared by Cardiology before proceeding and that's what really put the brakes on at that point.
Gavin has since been cleared by Cardiology, although we do have some things to worry about and need to be seen in genetics ASAP.
The second hurdle was the legal issues and that has been resolved with a medical power of attorney. I worked with the hospitals legal department to resolve the legal concerns in a way that was best for all involved. It was pretty straight forward but ended up being challenging to finalize because of some other issues that popped up. At the end of the day, it's done and we're covered on that end.
Along the way, we had an unexpected problem arise that created chaos and worry.
Gavin's twice a week IVIG infusions were disrupted by a nationwide shortage in the medication required to perform them. This was a huge problem that took almost a month to resolve.
In that time, Gavin missed almost 6 infusions and that created a potential problem with his immune system. The IVIG Infusions have since resumed but now he was required to be medically cleared by immunology in order to proceed with Friday's surgery.
I got the call yesterday, letting me know that his lab work looked good and he is cleared to move forward.
With all those pieces finally coming together, we have received his arrival time and the final go to move forward.
We have to arrived at Akron Children's Hospital no later than 6 AM. He should be back in surgery shortly after that.
Anyway, the boys are with Lizze's parents because there would be no time to drop them off in the morning before heading out.
Gavin's currently undergoing the unpleasantness of the presurgical prep but is in good spirits.
I'm a bundle of raw nerves right now and I don't see that getting any better until we can put this all behind us.
