Tough Day

I was doing the catheter on Miles and all the sudden panic filled my heart.

I’ve done the catheter a lot of times up to this point. Since our last pediatric urologist appointment we’ve been told that we need to do it twice a day. It’s still a little strange that I stick a tube up Miles’ “private part” so he can pee, but it’s becoming routine.

Still, when I was doing it today something came over me. I thought, “Oh my gosh, I’m peeing for him.” He’s now to the point where he will rarely pee on his own. His body has just stopped doing it. His bladder just keeps getting more and more stretched out to the point that it causes pain. When he does pee he only empties his bladder about half way. I have a CUVG to prove it.

Anyway, it’s not the catheter that freaked me out. It was the fact that this is one more thing that Miles can’t do. Then the flood of questions comes crashing back to me:
HOW DID THIS HAPPEN?
HOW FAR IS TOO FAR?
HOW LONG WILL ALL THIS CONTINUE?
HOW MUCH MORE WILL MILES NOT BE ABLE TO DO?
HOW MUCH MORE IS THERE NOT TO BE ABLE TO DO ON HIS OWN?

He can’t sit up, talk, walk, or go to the bathroom. He can’t have clear lungs without 6 breathing treatment medicines a day. His body convulses without seizure medication. His body goes into withdrawals if he’s even 3 hours late on getting his meds. He can’t move his arms or legs without Botox or his Baclofen pump. He can’t swallow even the smallest amount of water while brushing his teeth without choking for 5 minutes and turning colors. He can’t feed himself. He can’t even eat food or drink liquids. He can’t poop without a daily laxative and an enema. Now he can’t pee.

What is left?

Breath.

That’s all I can think of at this point.

He’s like a baby, an infant. For over 5 years I’ve taken care of an infant.

How far is too far? I never thought we would have to go as far as we have. I mourned when he had to get to feeding tube. It was The Thing I didn’t want him to have to get. I wanted him to be able to eat like a normal person. He enjoyed it until he couldn’t do it any longer. Eating by mouth was physically killing him. He was constantly aspirating into his lungs, which caused the continuous pneumonias.

Oh, I really don’t have a point here. My heart just feels heavy today.

I don’t understand how a few minutes in time without oxygen could change our lives so drastically.