September 13, 2011
Luke had his "surgery" in the middle of September, it was a huge pain in the butt and trying time for me and I have no desire to relive it via blog, so this will be a short recap.
We had to be at the hospital at 5:45 am. Mom was here to go with us and help out with Vince.
We started out in the "play" waiting room. Then we got taken into this room for triage & to get Luke into his surgery gear.
After the triage room we went to the recovery room. Luke was allowed to play with some toys but ended up slipping on the dumb no-slip socks and busting his head. He was in tears when they came to get him to go back and they had to rip him away from me. My poor boy. I hated that they didn't put him to sleep in my arms like they did for his MRI when he was a tiny boy.
When they woke him up he was alone, they brought us back to the recovery room and he was crying for us. My heart was breaking.
I was not impressed with the recovery process. They had to take x-rays and didn't want Tim or I to be near him while they did them. That wasn't happening. I ended up getting in there & they forced him to lay down for a ton of x-rays only to find out the darn machine was broken.
So, I pulled him into my lap and then he immediately ripped out his tube. :( So, we decided to let them have ONE try to re-insert the tube into his nose (with only mild sedation) and then re-do the x-rays. They managed to get the tube in and then do the x-rays.
Luke was hysterical and I snuggled him until I got him to sleep. Then we put the "no-nos" on his arms so that he couldn't pull the tube from his nose again.
When we got up to his room he took a little while to get the anesthesia out of his system and to get used to the no-nos.
He ended up perking up pretty quickly & we spent the entire day chasing him around the hospital and the room. They did have a couple play rooms but they were only open sporadically. He took a good nap and was in bed by 9:30.
Around 11:00 Mom took Vinnie home with her and left us at the hospital with Luke. Tim stayed up with him until 3:30 am and then I took over until about 5:30. I ended up falling asleep for a bit before Luke got up for the day.
We had to record every time Luke nursed, ate, sat up, laid down, and cried by both pushing a button on his "pack-pack" and recording it on a chart. It was a pain in the butt.
Ultimately, we got the results of 16 biopsies (from his throat) and the pH probe test and learned a lot of nothing. Luke has reflux. He didn't spasm/twitch at all while the probe was in, so there is no way to confirm/deny that the twitches are in fact Sandifer's syndrome & NOT real seizures.
Fortunately he hasn't had ANY twitches since the last week of July. (knockonwood)
We are glad we did the test, even if we didn't learn much. If Luke does have more spasms/twitches we will be heading to the ER at CHKD to have them treated as seizures.