Monday, we slid further down the slippery slope of SMA. Ryan had a pretty good morning, had been sleeping a bit more than normal, but was happy for the most part when awake. We have been noticing that he is much more sensitive to his need for oxygen as his O2 sats seem to be dropping much more frequently when he sleeps. On Monday, we decided to increase his O2 while he is sleeping to help make him a bit more comfortable and I secured his cannula to his nose a bit tighter so it wouldn't pop out as much. It seems to have helped, but there is more.
That evening, when Ryan woke from his nap, we decided to take the kids on another walk. Walks have been a great way to get all of us out of the house because Ryan seems to really calm down and enjoy them. He is usually awake the entire time, quiet and content. Monday was different. Ryan was upset and crying for about half of the walk (requiring suctioning) and then finally calmed down and took a short nap. When we got home, he was still asleep, so we tried to put him down in his crib. He woke up in the process and then cried, cried and cried more. He just couldn't snap out of it, no matter what we did. We tried everthing we knew to try, changing scenery, bouncy chair with vibration, without, toys, talking, holding, music, suctioning, patting. Nothing was working. Frustrated and very upset, I took Ryan back to his room after about an hour straight of crying. I layed him in his crib, hoping he would calm, but still, no relief. I finally did what I didn't want to do and gave him some medication to help him. I cried as I pulled it up and put it into his tube, knowing this is just another step down the slippery slope of SMA.
It isn't that I had to give him the medication, I knew it would help him and that is what I wanted for him, to be able to relax. It is just that he needed it, and I am afraid he is going to need it more and more. And I know what that means for us... for him. There is no denying that his illness has progressed. In the past, we have seen Ryan require much more suctioning, have fewer "happy" times during the day, sleep longer, have more difficulty with his breathing effort, drop his O2 sats more frequently, become intolerant to position changes and is unable to suck on a pacifier. He does still coo some, but even that, I feel has diminished. I hate that the doctors are right. I want Ryan to be the exception to the statistics and the natural history of this illness. But, everything that we have seen happen over the last month has gone just how we were told it would.
Although there is no denying how sick Ryan has become, I also see the blogs, youtube videos and stories of other children of SMA type 1. I see their machines and masks, their families so happy to have them here still, their effort to lead the life they have been given. I am saddened that it doesn't seem possible for Ryan, as he doesn't seem to be his happy self anymore. I don't want more time with Ryan upset and agitated. If Ryan did seem to be happy still, maybe I would feel the impulse to try these "interventions" more, but he has seemed much more uncomfortable and miserable the last few days and it hurts so much. It hurts because I know he hurts. When he is upset and I cannot hold him close for fear that I will make it worse, I cry because he hurts. When he finally quiets and either falls asleep or somehow fights off the urge to continue crying, then I cry because I hurt. I don't want to let Ryan go, but I don't want to prolong his suffering.
Today was another bad day. Ryan was unhappy almost the entire time he was awake today, only calming for brief periods of time, unable to take his long nap. He was clearly more uncomfortable and agitated today. I am hoping it was just a "bad day" and that tomorrow will be better. I am hoping that we didn't slide further yet. I have cried and cried over the progression this disease seems to be making. I am scared to think our time is much shorter than I initially anticipated. I am scared that it could be soon. No matter when, I will not be ready, but I can only hope that somehow, we make Ryan more comfortable and that he doesn't have any more "bad days" like today.