Frustrations

X is getting tired of his feeding tube. I am too. I don't blame him. He's so active and has to lug this backpack around wherever he goes while he is hooked up. At night he has all this tubing that sometimes wraps around his legs or torso. He usually needs to pee around 4am and needs help because he's half asleep trying to move around with the tubing and backpack (our bathroom is downstairs and he is just too big for the potty chair we had in his room).

The other morning he was demanding that I get him a shirt from his bedroom. When I did not comply with his "request", he burst into tears and screamed " but I don't want to have to carry my backpack!!!!". My heart sank. I compromised and carried the backpack and tubing for him while he picked out a shirt.

Tonight I decided one of these mornings N (our oldest son) and I will wear backpacks with a long string coming out of it attached to our waist for one hour. Just so we can empathize more with X. N is not thrilled about this plan. At. All. Which tells me this will be an excellent experience for everyone.

Ever since camping three weeks ago, X has been having issues with granulation tissue. It's extra skin that grows up around the opening where the Mic-Key button enters his stomach (it's called a stoma, but that word gives me the heebie-jeebies...I don't know why, it never used to). He didn't have any before camping and now I can't get rid of it. It can get out of control pretty fast, so it's something I want to get rid of as soon as possible. To help, I have been taking the tubes off of his button when his feeding is done, so they don't pull on it. He cannot stand having them taken off or put back on. Not because it hurts, but because it interrupts whatever he is doing. I try to do it at the same time everyday, but that isn't always possible. There is usually a lot of screaming and yelling involved. I'll probably have some form of hearing loss soon. It doesn't happen all the time, but definitely the majority of the time.

It's hard to balance it all (at least for me). Tonight was a rough night and I was less than patient with X, and it's nights like these when I want to chuck the thing in the trash can. However, I can't deny how much his feeding tube has helped him and continues to help him. I belong to two groups on facebook that are about feeding disorders and feeding tubes and I know we are blessed beyond belief. The days and nights aren't always easy, but Jesus continues to give me everything I need and thankfully there is a lot of grace and mercy involved. X has been given everything he needs to do this, and I see that on a daily basis, which blows my mind at times. N is learning things on so many different levels, it's astounding. So, we'll continue on this path, with the hope that X will be able to wean off his feeding tube.