Just when I feel I am getting the hang of life right now, things seem to change. Even if they are subtle changes, it seems that it just throws a rift into everything. Like my whole outlook or focus changes because of a slight detour down the path I thought I was following.
So, last I told you, we had talked to Dr. Connolly. I have been wanting to type about our conversation, but part of what has kept me from it was the hope that I would have better news for you than I do. Everyone wants to help us with "treatment" for Ryan, or make sure we have the latest and not so greatest news on research trials, etc. I am open to and thankful for those who have been brave enough to call or email me with these suggestions. You all must know that your desire to help Ryan is appreciated but there is no desire greater than our own. But, in the event that I don't know, you brave the phone call or email, just to be sure, a difficult thing to do when a situation seems so grim. Dr. Connolly has advised us on many of these subjects and is a highly recommended physician from around the country. I know we are in capable hands and that she, if anyone, will know how to advise us best.
Which brings me to her advice. There truly isn't much we can do. Ryan's case is not like all other type 1 cases because truly, there are no two alike and no standard of treatment for these kids. Because all options stink, there are no good options. The choices we are to make are based on our own values. There is no right or wrong way. Much of the professional literature (i.e. "standards of care for SMA") states this very clearly. The "standard of care" written for SMA is strictly guidlines as this disease is so severe and no clinical trial or data has been able to change the probable outcome that we have already shared with you. Ryan's situation is unique in that he seems to be one of the "sicker" type 1 cases and because he has already been affected so significantly with his respiratory function and he is tiny. Many treatment options such as bi-pap, cough machines, experimental drugs, are not suitable for him and could possibly cause more damage and shorten his life even further.
I had a long talk with Ryan's new pulmonologist at Children's today and we will be seeing him in the hospital tomorrow for him to examine Ryan. I do feel that this physician will play a key role in the remainder of this difficult time for our family and got a good feeling from him that he will be there to support our decisions. I do think he has seen enough children with SMA to advise us confidently. That is what we need, someone who has helped and has experience with the care of SMA type 1 and we will also be leaning on the experiences and knowledge of the Wing's Nurses who are very expereinced with the daily care that works best Ryan. Because there is so much unclear and controversial information about SMA out there, this will be very important for Chris and I and to be sure that Ryan's "team" understands that our priority for him is for his days here to be the best they can be and when they days get difficult and unpleasant for him, that we help him through that and make him as comfortable as we can.
I fear this time so much. I fear that we are headed there sooner than I thought we would be. Ryan has already shown signs that his disease has worsened in the short 3 weeks we have been home. He requires more suctioning, what was once an every few days thing has become multiple times per day. He is more intolerant of positioning, especially in his car seat, which we are going to have to come up with a solution for and is not comforted by holding, unless cradled tummy down, facing outward. He also seems to have more frequent irritable periods, but each day is different and he seems to be physically working harder to breathe.
On a positive note, he does love his bouncy chair and enjoys playing with his toys, and is soothed with a pacifier if I hold it in for him. Another favorite pass time for both children is Charlotte pushing Ryan in his swing. They both are so happy most of the time when doing this activity. I love seeing them interact together.
I just don't like this feeling of suspension that we are in. We have jumped off the cliff, into the unknown. We know there is a bottom and don't know when we will get there, but it is the moments before, when you know you will hit that is frightening. Chris and I pray that Ryan does not feel that feeling. That feeling of fear or anxiety. That he already knows that there is a life so much better than the one he is living right now, in heaven. That God has already had a one-to-one talk with him and that he just knows, there is more to come. But then for us, as parents, we somehow pray that our last days with Ryan are good days, days when we would be completely taken by surprise if Ryan was called home because we had such a great day. We pray that those memories are what remain, not days of uncertainty, anguish for our son's struggle. We pray that he slips away peacefully and that his battle is not long and drawn out. Because what matters most to us that Ryan's quality of life is the best it can be. Quantity is not a concept that has importance anymore. Of course we want him here as long as possible, but our reasoning for wanting those days to be good may seem selfish at first, because it is harder on us when they are bad. But bad days for us are bad days for Ryan and if we are hurting, he is hurting. The two go together.
Daily I pray he feels our love, our committment to his needs, to being there when he hurts and being there when he is ready to smile and play. Oh how I hope he knows our love; that we would climb mountains for him and will climb this mountain with him. We will carry him to the peak to meet The Maker with the strength of Christ beside us. We will graciously pray for his life to be renewed in Heaven and that someday, the little boy that we love so much will greet us and say "Mommy, Daddy, I missed you. But look, I am well".