This morning Kai had some nice alert awake time and started throwing us all for a loop again. His breathing was even he was looking around. As our visitors rolled in everyone was kind of shocked that he was looking so good.
Shocker, Kai has fooled us again!!
While we were all happy to have this time, I wasn’t sure he was really any better off than the day before and just as I suspected he became less aware and awake as the day went on.
Around 9:00 tonight he started to gasp and looked like he was in pain. I held him up and I really thought he was going to throw up. As I held him his face became more distorted, his body began to pull and his eyes began to shake. I would say it lasted 45 seconds before he started to calm and then he let out one more cry and twinge. After that he fell right back to sleep. His lips were white and his face was almost green.
After it happened I felt it must have been a seizure. The nurse only caught the tail end but agreed that it likely was.
We have questioned seizures for so long with Kai but I never really felt sure until today. Of all of the things we have been told to expect with this end of life process this was the one I was hoping we could avoid. I don’t know why the thought of seizures was worse than most other things in my mind, I guess because they can be so unpredictable and there is not much we can do at this point to control them. And although I don’t think he was in pain it was scary to watch and obviously took a lot out of him. I was hoping he wouldn’t have to feel that. I was hoping we wouldn’t have to see that.
Last night as we saw the changes that were happening and we all became scared that the end actually may be nearing I had to remind myself that it is probably going to get much worse. Hopefully his pain will continue to be managed well, but we will see bigger and more clear signs as time goes on. I remembered saying the same thin to myself when I was in labor with Kai. Every time my contractions intensified I tried to tell myself to adjust because this was only the beginning, it is going to get much harder than this… and it did… but I also showed up at the hospital at 8.5 centimeters convinced I was going to be sent home… Because I had convinced myself it wasn’t that bad.
In the beginning and the end I can only tell myself to hold on and tuff it out so long before Kai just takes over and I have to let it all go and do things his way. This is the power of childbirth and apparently child death. I am merely a vessel to keep him safe and warm and get him where he needs to be, he will take control over the rest.