I posted about Caleb’s latest colonoscopy and endoscopy on my facebook but wanted to write an actual post since I felt if I wrote any more on there it would be way too long but these blog posts are meant to be longer.
Just a reminder, my son Caleb who just turned 8 has celiac disease and juvenile polyposis syndrome (diagnosed with both at age 4) so every year he has to have an endoscopy and colonoscopy with polypectomy (surgical removal of polyps).
It’s such a process every year to go through this with him and it’s quite exhausting, both mentally and physically. The amount of anxiety it causes me I can’t really even put into words but I try to not show anyone how it affects me, especially Caleb.
Knowing what I went through with his dad and all the ups and downs during his cancer battle it just brings back so much of that. The waiting for him to get done with his procedure praying nothing goes wrong and then the waiting on all the biopsies to come back praying they are all benign. It’s a lot.
The day before his procedure he has to do the liquid diet which of course he hates. I mean who doesn’t hate that? You can only have broth, jello, popsicles, clear liquids and have to take 7 capfuls of miralax on top of it all and ex lax, it’s annoying and he just wants real food. I don’t eat well on that day myself because I feel bad eating anything in front of him.
We arrived at 8:45 for the procedure. They came in around 10 to give him the premeds to help make him a little loopy and then took him back at 10:30. About an hour later they came and said it’d be about 20 more minutes, when 30 minutes rolled by I started getting more and more anxious, then 45 more minutes and finally he came in a little over 2 hours later. Seeing him with the oxygen on and just completely out is so hard to see. I know what to expect and it still gets me every single time.
His doctor came in and told me she removed 9 polyps this time and several she wasn’t able to remove like normal so she kept picking at them until she got it all, they bled and she clipped them to stop the bleeding (I can’t remember the name of it but they will pass in his stool eventually). They sent them all off for testing along with the biopsies of the esophagus, stomach and duodenum so just waiting on all of those results still. The polyps have to be tested because his dad had lymphoma so there’s always the chance they could be something but she said they all looked “normal”. They also pulled his top front tooth since it was about to fall out anyway and it was in their way for the procedure.
I sat there watching him sleep, holding his hand just waiting for the 20-30 minutes to pass by for him to wake up screaming and being a little incredible hulk and ripping out his IV like he has every other time but that didn’t happen. Knowing his history they gave him more meds to help him sleep longer and it actually made the experience so much better. He ended up waking up after 2 hours and he was loopy and funny this time. Some of it could be that he’s older now and has gone through this several times but I think it was the extra meds. He was so excited to see uncle Rob for the weekend and was excited about getting to drink “gatorade juice” as his loopy self called it.
We go in for our follow up next week and then they will see him again in 6 months to run another celiac panel. It looks like his numbers for celiac are a lot lower than before but it’s showing he’s still getting cross contaminated somehow. Everything I make is gluten free and he only eats gluten free at our house and during school we made his lunch and it’s always 100% gluten free. We rarely eat out and when we do it’s literally two places that he’s never had any issues with. He is with other relatives at times so I just need to make sure they are taking all the proper precautions with him with this disease and not getting him anything from restaurants that he will be contaminated at and making sure his meals they make for him aren’t contaminated as well. It can be hard navigating this disease and I am thankful for those that spend time with him try to do their best.