As parents of a child with special medical issues, we always have to be on our toes and ready to change plans at the drop of a hat if needed. This week was one of those weeks for us.
On Wednesday (2/1/23), Katie was off work and we had plans to run errands in town, but as she was changing Richard’s bandage over his Jtube/button and giving afternoon meds, the inner part of the button where the extension to give meds connects, popped out. Unfortunately this renders the button useless. And because it is a special Jtube, it has to be replaced at Seattle Children’s Hospital. So Kyle immediately contacted our GI team at the hospital and waited to hear what our next steps would be and when we could get the tube replaced by Interventional Radiology (IR). Thankfully, we were called back right away and were told to come in! Also thankfully, we’re in Monroe, WA which is only about an hour away from the hospital and definitely the closest we’ve been and will be for a while. The rest of the process was thankfully uneventful but took a couple hours of waiting and we went home with a shiny new J tube.
On Thursday (2/2/23), Katie was back at work (from home) and Kyle was getting Richard ready for the day BUT discovered that Richard had messed with his central line tube at some point. Kyle contacted the team again to inform- thankfully again, Richard only pulled it out a few millimeters, but Kyle and Richard had to go to the Everett Seattle Children’s location for an xray to make sure it was okay. So once again plans had to change on the fly.
We are hoping for much less excitement in the coming days/ weeks/ months.