Today is day two… Wesley will be having his g-tube replaced by a mic-key button today and he’s receiving Botox and Phenol injections to help with the spasticity. He should be a HAPPY camper after today’s procedures are done because he will have a lot more mobility AND no more tail on his tummy
As for Thursday…
We started the day at 4am waking up and getting dressed… then at 4:20 the power went OUT. Flicked on, then back OUT. Then on for a second, then OUT. And it stayed out for the next hour. Unfortunately, my mom arrived at 4:30 and we needed to leave! So, we left the pitch black house with my mom and 6 kids and drove her car and Mike’s van with three kids to Orlando for surgery. not a really great feeling to leave them home in the dark, even if they had lanterns!
During the course of the morning, our neighbors brought Kristopher and Lynae to the church, my mom brought the other 4 kids to therapy, then my mom grabbed McDonald’s and picked up Lynae at the church after.
Michael’s and my morning consisted of registration, admitting, getting the two boys’ records UNCROSSED… since they had the wrong kid with hypothyroidism and the wrong kid with a casein allergy! Oops…
They took Micah back, did his tubes, then called us for him as they called James back. They arranged for the boys to have their neck x-rays to screen for instability in their necks while we were there, so Michael stayed with Delaina (after the nurses OK’d her coming in to recovery… the receptionist said no way no how… but was overridden thankfully!!) and I brought Micah down for x-rays. James came out after we came back up and he was surprisingly HAPPY! Not miserable or fighting!!
James’ procedure was to put a g-tube back in. He had one for the first two years that he was with us, but we never had to use it except when he was hospitalized with Salmonella. Then… as soon as the tube was taken out… he started refusing to eat. Thankfully, his body’s lack of healing came in handy. His tube site never closed up! Whenever James would eat well, his shirt would end up wet. So, the doctor was able to thread a guide wire through that existing opening and pull the tube right through! No incision whatsoever. According to James’ behavior the rest of the day, really not much pain either! We did use regular Tylenol just to make sure he’s ok, but no need for anything more!
And both boys successfully had “long term” tubes placed in both ears.
We had an… unusual… x-ray tech for James. I just hope the films really show full flexion and extension for the spine x-rays. She pulled his jaw down instead of tilting his head toward his chest. Not exactly the same! :-/
Then, we tried to leave. By tried, I mean… unsuccessfully.
Mike put James in his van and I put Micah and Delaina in my mom’s car. Mike backed out of his parking space. I waited for him to drive by. Then, my phone rang. He was only parked three spaces down, so I was looking at his car… but he was calling!
When Mike backed out, his transmission cable disengaged from the gear shift inside the car. In other words, his car was in reverse and the gear shift was “loose” and was no good to try to get the car out of reverse! If he turned the car off, it wouldn’t turn back on without getting it in park, which he couldn’t do. And he was on the 3rd floor of the parking garage by the hospital!
So… while Michael messed with his car to try to find out how to fix it (with the car running and emergency brake engaged!) I called the hospital then was transferred to security. Two different security people came out and the goal was to back the fan up to the doctor parking area where there’s more spaces, and to leave it there until we could get it towed. Ironically, as we pulled in that morning there was a car broken down on the first level in the way and this was the second for the day…
After quite some time, a few phone calls on my part because though we had two cars, we didn’t have the ability to put everyone in my mom’s car because the carseats are too wide to fit three across (we didn’t have our Radians with us), and Michael fidgeting around with the engine and ripping up his dash undercarriage to try to access things…HE FIXED IT!
Well, mostly. Enough to get home, anyway, so an hour and a half later, we pulled out of the parking garage and headed HOME. THANK GOD! Thank you to all of our FB friends that were praying too!
Michael drove straight to the shop he uses for car stuff and had called ahead and found that they’d replaced the same part on another vehicle just last week. They said they could have the car back to us today. YAY!
The evening was much less exciting. Speech therapy at the house for three kids, and a visit from a friend to pick up something she’d left… which ended up being Mike and I locked out of the house by Brianna then rescued by Kristopher after we rang the bell 4 times! LOL We knew everyone inside was ok and safe before we went out, but still not fun to be locked out!
The rest of the day really was uneventful.
Now… for Wesley…