Our lead up to this day started 36 hours prior to this photo...anyone who has done a colon prep knows the process isn't glamorous and/or enjoyable. Unfortunately for Dylan he was doing both ends of his body, he was prepping for a upper Endoscopy, lower colonoscopy, and both being with biopsies throughout.
We left our house by 5:45 am, traffic was typical so we didn't end up at Kaiser Oakland until 7:30 am, which was plenty of time given we didn't need to be there until 8 am (1 hour prior to procedure time). As 8:30 am rolled around, here comes Dr. Rich strolling through, he stopped and asked why we were still sitting in the waiting room. Of course our answer is, "perhaps you should ask that of them". Dylan was swiftly taken back and prepped for "The Dylan Way" of going to sleep. You see in the past, when Dylan was really young, he was traumatized by gas induction for another Endoscopy, so we don't do gas...he does it his way, which is harder but it includes: oral versed, IV, and sleepy meds. This is something we chat with anesthesia with prior to his appointment, like I did this time and they were very understanding and we left our conversation on the same page. But low an behold when we arrive, they front desk person, back office nurses, and everyone in-between all have no clue. I've given up on being frustrated about it, as its just simple...its going to be done this way or its not getting done. If Dylan wants to endure an IV vs. breathing medicine that makes you unconscious, then so be it...he's earned that right to go out how he pleases.
Things took longer than expected but Amber made her way back with Dylan (they don't allow siblings so I stayed with Tegan in the waiting area). Amber spoke to both the Anesthesiologists and things were a go. The only thing left for us was to wait until they were done and hope all was uneventful. I know in the back of our mind, we know things typically aren't just so cut and dry and that easy going. We were about to find out that this day was no exception.
After a little over 1.25 hrs, Dr. Rich and the Anesthesiologists came and talked to us in the waiting room. At first notice I thought it was odd that the male Anesthesiologist had blood on his pants but I was more interested in what Dr. Rich had to say. It was in this moment we could tell by his face mannerisms that he was surprised in what he saw.
He was talking about how is Esophagus looked decent but he could see pinkish rings in it. He said he made his way through his stomach and out to his duodenum (this is the sharp turn off the stomach that connects to the small intestine), he said the outlet of his stomach was thickened, he said the Duodenum was thickened and he hard a really hard time, almost impossible time, getting through it. He then mentioned his colon is thickened too. This is about the time the female Anesthesiologist mentioned that Dylan had a little complication during the procedure. She mentioned that Dylan started throwing up, she had to do an emergency intubation and she didn't think he aspirated anything but couldn't be 100% sure, that we needed to watch him very closely over the next 24-48 hrs for signs of wheezing, difficulty breathing, fever (Pneumonia is the fear from this). As we were trying to figure out why or how this happened, she then mentioned that his IV blew as well and they had to place a new one in his other hand. Dr. Rich then advised he wants a Barium Study done on Dylan, to take a closer look on how his food is processing through his GI tract. All this was just too much to take in, literally nothing had gone smoothly from the sounds of it.
It was surprising to hear these things, shocking actually. But mostly, this is what Amber and I have been fighting about for Dylan. Every time his labs go haywire, liver numbers jump up, EOS showing as high as they are...we know its an immune response, which just means inflammation. I have asked his doctors over and over and made statements to the affect of, "if his numbers jump up, we know this affects his organ/tissues, and this constant back and forth has to have a negative effect". They always respond with the same thing, "little bumps like this don't cause long term damage".
I literally can't even keep my mind clear, I'm so upset, mostly I'm hurt for Dylan. Thickening of tissues, especially in your GI tract is never a good thing and for the most part its NOT reversible. Terms like Chron's was tossed into our conversation, Eosinophilia, non specific tissue inflammation, etc...the bottom line is this, although we certainly hope Dylan doesn't have another terrible disease like Chron's, him being diagnosed with Eosinophilia is borderline very similar in maintenance....it means repeat procedures like this for life and lifelong need to be on steroids.
We have been pleading and begging with Dylan's caregivers to do more, to listen to our concern's on his constant state of up/down labs, and his always high state of Eosinophils in his system. I understand Dylan isn't bed ridden and dieing in the hospital but dare I say brushing off his conditions, symptoms, concerns has now only complicated things and you don't get to undo that, no sorry's can fix it.