What I realized as I met with Teddy’s surgeon on Monday, was how little I remembered of the technical details related to Fulton’s spinal fusion. I wish I would’ve taken more notes because as we discussed Tuesday’s game plan I was surprised at what I’d forgotten. (Like the fact that Fulton had a small opening left in his fusion so he could continue to receive Spinraza injections via lumbar puncture. Not an issue for Teddy since he and Fulton now take an oral medication.) Most of my memories were related to Fulton’s discomfort and little else. So please forgive all the details in this post. It’s written more for my memory than for my readers.
We arrived at 6 a.m. and Teddy was in his usual spirits. As they explained risks and had us sign paperwork in the ER, most was unfamiliar to me. (We signed documents outlining details of the surgery, its risks, risks of not performing the surgery, and an explanation/risks of blood transfusions, of which Teddy needed one, not surprisingly.) Tony remembered more of it than I did. We gave our last kisses to Teddy just before 7:30 a.m. and they wheeled him away. Tony and I then began the waiting process, or as I told Tony, our last peaceful moment for the next six weeks. I had meal prepped breakfast and lunch for us because I’m trying to eat healthier and also the Shriner’s cafeteria is smaller with a limited selection and shorter hours of operation. I read, listened to a podcast, did some stuff online, walked laps around the floors, while Tony worked. I was happy to see the courtyard “play area” was open. It had been off limits for much of COVID and I was afraid Teddy wouldn’t get to enjoy it during his stay. Tony and I took advantage by playing air hockey, ping pong and shooting baskets. We got calls from the OR every two hours with updates. Everything went well and the surgery was wrapped up on the early side by 2:30 p.m.. The breathing tube came out within 40 minutes post-op, which is great since breathing issues are always a concern when it comes to anesthesia and SMA.
But even a successful surgery means a painful recovery. I wasn’t prepared to see Fulton that way, but thankfully, I was ready to see Teddy; I knew what to expect and I knew that he would not remember most of the next 12-24 hours so I didn’t need to beat myself up if I couldn’t make him comfortable or happy. I knew that he was going to be unhappy and while I could adjust, and help him, nothing was going to make him feel 100 percent better right now and thankfully he wouldn’t remember any of it.
For most of the evening he was acting like an angry drunk, making unreasonable demands and then trying to get away with doing the things we said he couldn’t do (specifically – roll himself into other positions). Then he’d yell at us and pass out. Going through it all before helped me see the humor in it rather than worrying about things I couldn’t change and that were normal to the healing process. Tony and I ate dinner together before he left for the evening.
I was prepared to be up adjusting him two to four times every hour throughout the night and he didn’t disappoint. I knew to expect the alarms, the nurses, the respitory therapists and so I laid down to sleep at 730 p.m. and didn’t feel too awful when I woke up for the day with Teddy around 5 a.m..
A day on hospital time. They started weaning Teddy off different medicines and he was able to try eating lunch. They moved him to oral pain meds vs IV and thankfully he tolerated the meds fine. Fulton experienced a lot of nausea from the pain meds and that created its own set of issues. Thankfully, that has not been the case for Teddy. He passed the day by watching sports commentary shows. I think I will come away from this experience never needing to watch another sports show again. He was moved out of the PICU and into a regular room in the evening. Teddy ate some dinner, and Tony arrived with my dinner shortly afterwards. I went home and got a great nights sleep.
More steady progress. Teddy sat up in his wheelchair for the first time for about 45 minutes. His chair needs several modifications to accommodate his new, taller stature. He still needs constant repositioning, and remains uncomfortable. Tony kept me updated through the day while I caught up on laundry, some school things, and phone calls at home. I went to a bookstore and bought a few books for Teddy to enjoy and actually accomplished some Christmas shopping.
As Tony and I run back and forth, my mom has been keeping the house in order, playing as many board games as Fulton, Byron and Edie can handle, and making a steady stream of baked goods.
I came back after supper, bringing dinner for Tony, and I’m settling in for two nights. Even on a regular floor, we can expect visitors at 10 p.m., 2 a.m., and 6 a.m., minimum. Tomorrow’s plan is to get Teddy up in his chair twice. With the right adjustments to the wheelchair, maybe he can even drive around the hallways.
Thank you for your prayers everyone! He’s on the right track towards recovery- slowly but surely. I’m hoping to do a blog update on the weekend and discharge early next week. I’m assuming he’ll be heading home on Monday. Be sure to visit Instagram for any updates in the meantime.