Ryan is pretty much back to his old self but he has an infection at the cecostomy site. I expected this because when his g-tube was put in seven years ago, it was infected for months. He is on an antibiotic now, and it is obvious he is in a little bit of pain. We have also had some problems getting the new tube to flush every morning for about a week now. It’s very hard to push the fluid through for the first 20 ccs or so then it gets very easy for the last 40 ccs. I called the surgeon, and he wants to see how he does for the next week or so to see if it resolves. We already have a follow up appointment in a week so if we are still having problems, they will do an x-ray when we go back. The nurse had never heard of this problem, and by the doctor’s answer, I’m guessing he hasn’t either. It could be something as simple as a little kink in the tubing, but whatever it is, we are hoping it resolves soon. Today Travis took Ryan to Omaha to see if the battery in his vagus nerve stimulator still has any life in it, and sadly, it does not. The battery is completely dead so his VNS has not been working for a while. That explains the increase in seizure activity we’ve seen lately so we know it does help when the battery works. Those batteries are suppose work for 7-9 years but Ryan’s only lasted 3 years! His settings are very high – as high as we can go – but I don’t think anyone expected it to die this quick. I’m sure you can guess what that means – more surgery. Ugh! We have been so thankful Ryan came though the cecostomy surgery without any tummy issues and now we have to put him through surgery again. The neurosurgeon’s office will call us probably next week to schedule it, and thankfully we don’t have to go in and see this surgeon before we head to the OR. And we love this surgeon – he is the one who did all four of Ryan’s brain surgeries, and he put the VNS in too. At least it’s a quick procedure but it still requires an incision in Ryan’s chest and another possibility of his GI system completely shutting down.
School starts in only five days! Travis is having a hard time thinking about sending Ryan to middle school; I think I’m just in denial about it because I’m fine. It’s going to be a very hard transition for sure. The kids are so busy, and Sidney and Brad are already working on homework assignments. They both had to read a book and do an assignment that is due before school even starts. Sidney is in diff literature and Brad is taking an AP lit class. At least school starting means fall is right around the corner! It’s my favorite season (can you say football?!) and I can’t wait for cooler weather so I can open all the windows. Trevor started football practice last night and this evening he came home very sore. I have to take him for mandatory concussion testing tomorrow night at one of the hospitals and then next week he starts in on nightly two hour practices. This is our last year doing Midget Football which is kind of bittersweet.
We are facing a few bumps in the road with Ryan, but overall, things are going well. It’s all about perspective and everything that is not going as we hoped can be fixed so we will deal with it as we have with everything else – one day at a time. The Lord has blessed us with health for Ryan and while he may be weakening, we have been able to avoid serious, acute illnesses and that is definitely something to be very thankful for!
Blessings to you all!