We had our final visit before next month’s surgery. We got lucky and there was a last minute cancellation at the Ronald McDonald House, so the siblings finally got to check out the place! The kids had so much fun playing on the indoor and outdoor playgrounds that they spent the whole time there aside from sleeping. Now the kids are excited to visit next month, which is helpful!
Jack got a CT scan to make sure there are no surprises during surgery, had a couple other tests and met with the diabetes management team to go over best practices. He’s feeling a lot better about the idea of having things stuck to his body and getting better at the finger pokes. I’m proud of how far he’s come! His extreme fear of needles is still very much there, but he’s learning to adapt.
The siblings got to tag along to appointments and got to explore the hospital for a bit. A child life specialist met up with them and walked them through the upcoming surgery and even brought a therapy dog for the kids to play with. They are all doing a lot better with the idea of the surgery now as well.
We took a family adventure to John Bryan State Park after our appointments and did some family hiking and climbing. It was a great way to get all the nervous energy and tension out from the day. There’s a lot of hiking and climbing surrounding Cincinnati, and I think we are all hoping to take advantage once Jack is outpatient this spring.
Jack has an appointment next week with a local pancreas doctor at Mott. While this team has had zero interaction with us the past six months, I think it’s still important to meet the local expert as we will likely need support in the future. It’s still crazy to me that after 3+ years of GI issues and multiple local hospitalizations for pancreatitis that we have never been considered a pancreas patient at Mott. This appointment was scheduled six months ago as a ‘just to see how it’s going’ after I had begged for YEARS and instead of getting the care we needed, we had to go elsewhere. It still blows my mind that 8 months ago this team was telling me he totally fine and there’s nothing wrong. I’ve said it a million times, but follow your gut. If your problems are being ignored or belittled, find someone who will listen. Thank goodness for second opinions.
I don’t anticipate any additional updates until April 29 (surgery prep day), but I hope to see everyone at Jack’s goodbye pancreas party on the 21st!
