That man and that operation changed Autumn's life.
Those of you who have been following along for a year or more know that Autumn was diagnosed with Chiari Malformation last summer. The symptoms of Chiari run the gamete, which is why it is often misdiagnosed and can take years to find. Autumn's outward symptoms, which were sporadic vomiting, excessive drooling while sleeping and snoring - and the symptom that we couldn't see - central sleep apnea, lead to her diagnosis. The discovery of the central sleep apnea, which is the number one cause of death for people with Chiari Malformation, lead to her emergency surgery.
I have detailed on the blog what Autumn's life was like prior to surgery. Needless to say, it wasn't fun for anyone - especially Autumn - who was waking up every two minutes at night because her body didn't know it needed to breath. According to the results of Autumn's sleep study, in her five years of life, she had never experienced a deep enough sleep to dream.
I tossed and turned over the decision to send Autumn into surgery. My brain told me it was necessary and the right thing to do. My heart told me to pick that baby up and run. At our surgery consultation, Autumn's neurosurgeon explained that he could not guarantee what effect the surgery would have on the already existing symptoms - but that resolving 80% of them was possible. He did guarantee that if we did not send Autumn in for this surgery, she would get progressively worse, and the next set of symptoms would not be reversible.
I slept in Autumn's hospital room with her every night during our hospital stay. The first night there I remember noticing that I did not hear her snoring - I chalked it up to the large amount of medication she was on. The second day, Steve mentioned to me that she was not drooling when she slept, the way she had four days before. The third day, for the first time ever, I slept soundly right next to my daughter in her hospital bed. She didn't wake up coughing once.
Autumn's surgery went exactly as it was supposed to. Her recovery was as smooth as could be and Steve and I both agree that, at a minimum, 80% of her symptoms have resolved. Autumn does still get sick from time to time, and we have come to realize that smells are a huge thing for her, but it is much more manageable then it ever was before. Most importantly, we have slowed the progression of any future symptoms.
One year ago today I sat in a waiting room, sobbing, questioning if we had made the right decision. Questioning why God would put our girl through all of this. Questioning what her future might look like, if the surgery didn't work. Today, I sit here knowing that without a doubt we made the right decision for our daughter. I'll never know why God put Autumn through this trial, but I do know all of the lessons that have been learned from it (mostly by me) and all of the positivity that continues to come from it, as we reach out to help others who may find themselves in a similar place.
I don't know what Autumn's future looks like, but what parent does? What I do know is that on the way to school this morning Autumn told me, in great detail, about a dream she had last night. And that makes every one of those sleepless nights worth it.
