From Julian's COTA Journal.
Julian had a follow-up appointment last Thursday to flush the new catheter, change the dressing at the catheter exit, and remove the stitches that were holding the exit wound closed post-surgery. Everything went well until it was time to take the stitches out. It took a nurse, a doctor and me (holding him down) what seemed like forever to finally remove the stitches. Julian, if he were able, would describe the incident as traumatic. After it was over, we went across the street and had pizza. One of Julian's favorites.
Overall, Julian's recovery has been a miracle by itself. Less than a week after the surgery, he was basically back to his normal, energetic, sun-shiny self. Which is a huge relief to Stacy and I, as we're always concerned about how all of this medical intervention might affect his quality of life, here in the present and off in the future. He's a little confused about the tube now wrapped up under his shirt, and has asked us a few times if he can take it off, but he doesn't seem to be experiencing any kind of pain or discomfort.
So today, dialysis training begins. Stacy and I have been a collective bundle of nerves since the surgery, fearful of possible infection, and just anxious in general about what this all means and what the future holds. Training takes two weeks (!) which means bundling Julian up in the car and driving him to the new Children's Hospital in Aurora, about 50 miles away - every day. One of my concerns for him at this point is that he'll be bored. I mean, what do you do with an energetic 3-year-old for a full day at a hospital when you're supposed to be paying attention to an instructor and he's supposed to be tethered to a machine? I guess we'll find out. We're also interested to see what effect the dialysis has on Julian's overall health and blood chemistry, which is how they monitor how severe his condition is. We're praying that he starts to grow and gain weight, one of many concerns for us.
It's all a little overwhelming right now, on the brink of something so big and new. I'm sure once we get in and start learning how it all works and how we, as Julian's home care-providers, are supposed to use the equipment and monitor his progress, the nerves will start to settle down. But in the mean time...
Please pray for all of us, for health for Julian, for all the stuff mentioned above, and that Stacy and I will get enough rest. That's a big concern for me especially, as I'll be juggling my job and the new training regimen for the next two weeks. Also, those night-time diaper changes... anyway, we're just at the beginning of a long, new road, and I'm tired already.
Until next time...