It was a terrible experience that reminded us of how easy it is for things to go wrong when you have a child that is on 24 hour life support.
Well, we did get it in eventually and it turned that he needed a revision surgery to fix the problem. Phew, it wasn't just bad aim on my part. Thankfully, the doctors saw the urgency in the matter and within a couple of weeks we were in the pre-operating room.
We had prepped Nate well in advanced and he handled it well but was still nervous, so the nurse kindly gave him some drugs to calm him and within a matter of seconds Nate was high as a kite and giggling in his soundless way at everything. Nothing funnier then seeing your 4 year-old with the giggles and the munchies.
At first he was just zoney and talked like he had marbles in his mouth.
Then he couldn't stop his soundless giggles.
This wasn't the worst hospital stay we've had. We only had to stay about 6 days (although it was supposed to only be 2) and the staff was very nice to us. Initially, we thought the week was going to go badly. Nate came out of anesthesia very badly. For about an hour he cried and begged to go home. Every tube and wire attached was bothering him and he just wanted to go.
Eventually though he calmed down and actually enjoyed much of the experience. Nate received visitors constantly, had some new toys to play with was generally given a lot of attention. Although, he never completely lost his vigilance. Always worried someone was coming to poke his I.V. or do him harm, he greeted everyone who entered with "What are you here for?". He didn't mess around and was not ready to be friendly unless you made your intentions know and he deemed them harmless.
|Nate guarded his room tenaciously.|
By the end Nate was telling us he didn't want to leave. With all the attention and playmates he was getting who could blame him.
We even had people come down from the play room (since Nate couldn't leave his room) to bring him dinosaur toys since they had heard about him and his love for dinos.
Here's Nate teaching his BFF George the basics of dinosaurs.
Nate's trach is nice and clean now and we're no longer worried about switching trachs. At first I was a little exasperated at the hospital stay but I realized that this is the life of family with a severely disabled child. Nate will be in and out of hospitals throughout his whole life and probably undergoing procedures much worse than this.
It's what we signed on for coming into this world. Sometimes I wonder if I could go back in time and avoid having a child with SMARD, would I do that? Would I give up Nate to have some other child without SMARD, or no child at all?
The answer is always "no". So if I wouldn't be willing to give up the life I have, the child I have to spare us the never-ending pain of a genetic disorder, then it can't be anything but a gift.