So, we are finishing day 1.
There ended up being an emergency surgery first thing this morning so our surgery ended up being delayed from a 12:30ish surgery to a 5:45ish surgery. Titus was a champ. He complained about being hungry starting at about 2:00 but was pretty amazingly tough. Not that it’s about us, but Jared and I didn’t eat during that whole time either, so we literally felt the discomfort right along with him. It was a long day for all of us. The surgery itself went pretty smoothly and quickly. After surgery he woke up trying to take the halo off, roll over, scratch his nose, and pretty much move all over. Eventually he woke up enough to stay still. Then we moved into our more permanent room.
It has been pretty rough since then, he has fully realized what no moving means. He wants to sleep on his side but can’t. He has an IV, a catheter, and is hooked up to machines and he is uncomfortable. He can’t eat a real meal until tomorrow, and the liquid diet isn’t helping Titus feel any happier. The nurses don’t want him on solid food for 12 hours because it could make him nauseous and throwing up while in the halo would be awful. But he just got his dose of Valium and seems to be heading towards sleep, which would be great.
Meanwhile, I’m sitting next to him, most often holding his hand, and hoping each day will get better.
Titus seemed more joyful the last two days. With one and a half days to go and lots of fun packed in, I’m hopeful he can enjoy this time. He still knows it’s looming, but he doesn’t seem as stressed.
We got our check in time. It looks like we will be checking in at 11:45, which means he can’t eat after 5:15am. We will likely wake him early and let him eat breakfast. We even have some enjoyable things planned for that morning, doing what we can to make the best of a rotten situation.
These were the words from T tonight. He is all the feels – if we were talking about the dark and terrified feels. He knows we are going in on Thursday and as the day approaches, he is considering running away. Seriously. And I may be the get away driver. Not so seriously.
At this point, we are trying to find the Can Do spirit. We have been preparing as much as we can. We have talked about it, planned for it, and know we need to get through it.
Also, I did get a lap table, for those who are wondering.
First off, we finally confirmed surgery dates for next week. We will go in sometime between 6am and noon on Aug 24 to begin traction.
Best case scenario to prayer for: That traction alone will be work amazingly well and without a doubt will work for the long term. And that he will have such good response post-hospital he we be in the halo brace for the shortest amount of time possible. There is more detailed information and some background below.
The goal of traction is to reduce how much his first vertebrae is out of line. For years we (and the doctors) thought his neck tilt was due to muscle issues because the skeletal issues didn’t show up on x-rays. As we prepared to do another muscle surgery (to loosen the overly tight neck muscle) the new doctor wanted to do a CT and MRI to confirm it wasn’t skeletal. Well, it turns out it is skeletal. His C1 (1st vertebrae) and C2 (2nd vertebrae) look as though they have melted. They may have been that way since he was born. It was that way when we met him at 2 years old. Although there is little chance of it working, we hope traction (along with muscle relaxers) will be enough to straighten his spine.
If traction doesn’t work, he will go into surgery (Aug 29) to have his vertebrae fused. This will mean a lifetime of less mobility, but an improvement from his current state.
Either way, he will be leaving the hospital with a halo brace for a minimum of 3 months. While in the halo, he can’t run, jump, rough-house, climb, and he absolutely can’t fall. He won’t be able to look down or side to side without moving his entire body. It will feel like forever to him. Although it is super sad, and going to be hard on him, we ask that you don’t say “poor baby” (or the like) to him. Instead, say things like “man, that’s terrible; but you’re such a strong kid” or “this is hard, but you can do this”.
It appears Titus will begin his Halo cast traction on August 24th. The date isn’t set in stone but it’s what we are currently expecting. For those of you don’t know, the goal of the traction to reduce the first vertebrae which is out of line. For the entire time he will be in bed, with very MINIMAL movement.
If his traction doesn’t seem to be working then we will move to spinal fusion, possibly on the 29th.
Regardless of whether the traction alone is enough or if he ends up with spinal fusion, Titus will remain in the Halo brace for 3 to 6 months after he is released from the hospital. We don’t know how long he will be in the hospital. If you are wondering about visiting us while we are there, we won’t know how that will work until after the traction begins.
For those who want to help, here are somethings I know we would like to borrow. Here’s the list:
- Controller that works with iPad
- A baby bottle (needs to be usable)
- Tabletop easel
I’ll try to keep this updated as we know more. Right now, we feel like we are standing on a precipice and there are so many unknowns.
It took 88 days from foundation pour to move in. We moved in three weeks ago (on Valentine’s weekend) and are slowly unpacking. I wanted to keep up on the blog through the final couple of weeks and to document the moving in, but obviously that didn’t happen. These pictures aren’t great – this was a quick attempt to get something up, so please excuse some of the poor picture quality. I will try to work backward someday, but for now – a look at the finished house.
Garage (I forgot to get a pic of Hubby’s shop, but it’s full of stuff being moved in still).
You walk in from the garage to the laundry room/mud room. This has worked great for kids washing their hands and taking off muddy clothes before coming in the house.
Our walk in closest.
The dining room and kitchen (shot from the living room).
The living room.
Another shot of the living room.
My favorite room – the homeschool room (AKA master bedroom, but we chose to turn it into a 2nd living space).
Deck that satisfied county code. It work pretty well as a outdoor play pen for toddlers and a lunch spot for the kiddos. All in all, it’s turned out far more useful then we ever expected.
We had a couple weeks sans internet (Frontier hates us – I’m certain). And the last week we’ve been painting ALL THE TIME. Therefore, here’s a photo dump to catch up.
The windows have been installed and siding has been applied.
The garage floor has been poured and the garage door has been installed.
Most exciting, we have the 2nd phase of our schedule and it shows a completion date of February 13th! Like any due date this one isn’t set in stone, yet we are still counting down the days. It probably doesn’t need to be said, but we can’t wait!