Today may have been the longest day ever in the history of the world. Caleb's tethered cord release was scheduled for 7 am, so we had to be at the hospital by 5:30...which meant Glenn and I were up at 3:30 this morning. I honestly didn't feel like I even fell asleep last night. It was like I closed my eyes and then moments later the alarm was going off at a ridiculous hour. True to form, Caleb did amazing this morning. He just went with the flow, didn't seem anxious or worried at all. I'm convinced that he was feeling the peace of all your prayers. Without a doubt, Glenn and I were far more nervous than Caleb was. Probably because we had a full understanding of what he was about to go through.
(playing some video games with daddy before surgery)
We sent Caleb off to surgery around 7:15 and it was almost 6 hours before we saw him again. Longest six hours of my life. They did the ICP monitor first and the pressure was stable in his brain so they proceeded with the cord release. The neurosurgeon said things went well, he had to make the incision higher up than he had originally anticipated but he was able to fully release the cord. He said it was very tethered and there was quite a bit of fluid built up at the bottom of the cord. He feels pretty confident that all the issues Caleb has been having is due to the tethering. I made it a point to ask if we could bypass the PICU after surgery and the neurosurgeon agreed that the ICU wouldn't be necessary so Caleb went straight from recovery to his room. That was an answered prayer!
(This is Caleb about an hour after surgery)
The neurosurgeon told us that in all his years of doing this he has never seen a child reading a book to nurses in the recovery room. That's Caleb. Even after a 5 hour surgery, the boy wants to read a book. Love him.
I have a feeling this kid is going to be playing a lot of video games in the days (maybe even weeks) ahead.
All-in-all, Caleb seems to be doing well. He has been on his back for the most part. We did try to put him on his tummy because that is his preferred sleeping position but he just couldn't get comfortable that way and he quickly began to complain of back pain. So I think he will have to stay flat on his back or maybe on his side. The neurosurgeon said that he has to be completely flat. They will gradually let him sit up for very short periods of time but then he has to go back to being flat. This is just the best way to prevent pressure from building at the incision site. It appears that the biggest concern is fluid leaking from the incision and that would be very, very, very bad. So, we will do whatever we can to prevent that. His legs are twitching a lot and moving involuntarily. I'm assuming that is due to his nerves being messed with. I imagine it will take some time before things settle down.
I did pretty well myself today too. I would check my computer every couple of hours and each time I was greeted with dozens of comments, messages, and prayers. I was so encouraged and touched. All the love we have received has really helped to make a rough time a little smoother. I'm grateful to my mom who helped with Benjamin so I could be at the hospital all day. I'm grateful for all the family that was at the hospital today, it served as a great distraction for me. I'm grateful to one of our pastors who was at the hospital at 6:30 this morning so he could pray for Caleb and for us. I'm grateful for the meals that have been arranged for us. I am grateful for the wonderful family that has taken Izzy in so that we can deal with this. And I am beyond grateful that my baby made it through the surgery and that it is behind us now. I know there is a rough recovery ahead but that Caleb is one strong boy and he will come through with flying colors. He's my hero.
Thank you for all the prayers. I am convinced that Caleb was absolutely covered in prayer this morning. And even though I was anxious to get the surgery behind us, I felt peace, and that is something that only God could have given me. So, thank you for the prayers and keep them coming! I will continue to update on Caleb's recovery. I'll try to get more pictures tomorrow.