I guess they're never really on anyone's radar.
I explained the events that lead up to Autumn's diagnosis and surgery date here {bless you if you actually read that - it's a long one}. So, now I will pick up where I left off. The day before Autumn's surgery started out like every week day - I dropped the kids off at school and I headed into work. We weren't sure what time her per-surgery appointments were going to be scheduled for, so I put in as much time at work as possible in preparation for being gone. Once I received the call that her appointments had been scheduled I left work, picked Autumn up and headed to the Children's Hospital. Steve was not able to leave as quickly, so my saint of a best friend drove two hours to the hospital with Autumn and I, sat through two appointments and then drove my car the two hours back home. On her birthday.
Autumn had a spinal MRI and a pre-op appointment on Monday. We got through both, checked in at the hotel, had dinner with my parents, bathed the kids and headed to bed. With the exception of having to bath Autumn with the prescribed anti-bacterial soap it was a very normal evening. There were lots of distractions to keep my mind busy - just moving from one task to the next. It wasn't until the lights were out and I was still in bed that my mind began to wander and reality started to sink in. Autumn was having brain surgery. I laid in bed, replaying the events in my mind, thinking about how we had gotten to this point. I knew in my heart that we had made the right decision to go through with the surgery - but knowing that doesn't make it any less terrifying.
I am a control freak. That is one of the reasons why my pregnancies were so stressful - I had no control over what was going on in there. I also had no control over what was about to happen. I had to hand my daughter over to this man, who I had met only once, and trust him to operate on her brain and spine. Laying in that dark, quiet room - in that unfamiliar bed - I have never been so scared in my entire life. As tears ran down my face I FINALLY let it go and trusted God to take over. He had gotten her this far - when we didn't know what the problem was. As an infant, sleeping in her bassinet with a brain that wasn't telling her body to breathe, all those nights when she could have aspirated after suddenly waking up with a mouth full of saliva because her brain wasn't telling her body to swallow, all those tumbles and rolls in gymnastics - it would've taken just one roll on her neck in the wrong place. He had gotten her through all of that - why was I doubting this? For the first time in my life I truly handed it over to God and asked him not to let me down.
I rolled out of bed at 4:45 on Tuesday morning. Autumn's surgery was scheduled for 8:15 and we needed to be to the hospital by 6. At 6 o'clock on the dot Autumn was called into pre-op. Steve and I were able to go with her and wait out the two hours before surgery. One of the neurosurgeons who would be in the operating room came by and spoke with us, as did the anesthesiologists. We were told that one of us could go back into the operating room with Autumn until she fell asleep and it was decided that Steve would go. I was having a hard enough time keeping it together as I watched the minutes countdown.
The clock above Autumn's hospital bed hit 8:15 and the anesthesiologists came to take them back. I stood in the hallway and watched as her hospital bed was wheeled into the OR. She was laughing at something one of the doctors had said. She turned around, smiled at me and waved goodbye, I watched until she was no longer in sight. Standing in that hallway with doctors, nurses and patients whizzing by me, I closed my eyes and said a silent prayer. Then I turned around, wiped tears from my cheeks and headed towards the elevator that would take me back down to the waiting room.
Once I got to the waiting room I lost it. Like ugly cry, scare the crap out of Nate lost it. Steve came back down and reported that she had no problem going under and quickly fell asleep. That made me feel a little better. The anesthesiologists had informed us that the surgery was scheduled to last four hours and we would receive a call in the waiting room halfway through to give us an update. The call came around 10:30 - Steve and I raced to the receptionists desk to hear what was going on. Everything was looking good and on schedule - we would get another call at 12 if the surgeon wasn't done before then.
The wait from 10:30 to 12 felt so much longer then the two hours before - I remember getting really antsy around 11:45. At right around 12 the neurosurgeon walked into the waiting room. The surgery was done and she was resting in ICU. Everything had gone smoothly. He explained that he had removed a portion of the lower part of Autumn's skull, shaved down her top vertebra and removed a portion of the tonsils (non-functioning brain). He had then opened the dura (protective covering of the brain) and inserted a patch, essentially making the dura larger to accommodate Autumn's brain.
We headed up to the Intensive Care Unit to see her.
I didn't know what to expect when we walked into her hospital room. Several people had warned me that she may have bruising or swelling on her face and head, but she didn't. She was laying in bed, curled up on her side, her hair in two french braids. She looked pale and very small, I bent down beside her and whispered her name. She opened her eyes, looked at Steve and I and asked to go home.
Tuesday night was the roughest. Due to the anesthesia Autumn was very nauseous and vomited almost hourly. She refused to eat and took sips of water here and there. Wednesday morning she turned a corner and the vomiting significantly decreased. She did still get sick, but it wasn't as frequent and she started being able to keep down more fluids. Her incision looked great and neurologically she was fine, We got moved out of the ICU and into a regular room on the Pediatric floor Wednesday afternoon. From there it was all about pain management. Although the vomiting had started to wear off Autumn's headaches were increasing with a vengeance. She could not do much physically - even a trip to the bathroom was enough to bring on a headache and a long nap. She stayed on round-the-clock pain medication and on Thursday they began to wean her off the good stuff and onto Tylenol and Ibuprofen,
We were released to go home Friday afternoon.
The car ride home was fairly uneventful. Autumn did get sick one time, but honestly we are so used to that, that it wasn't surprising.
Since being home, Autumn's recovery has been great! She transitioned to Tylenol and Ibuprofen before leaving the hospital so we maintained her round-the-clock doses of those at home. As long as we are able to stay ahead of the pain, we are good. Friday evening I was able to get her to drink a milkshake and by Saturday morning she was slowly starting to eat solid food again.
As of today Autumn is 2 weeks and 2 days post-op. She does still get worn out pretty easy and over exerting herself brings on some nasty headaches - so it is important to keep her fairly calm. Doing laps around the backyard is also out. Her incision is healing up nicely. The biggest thing that you worry about with this type of surgery is spinal fluid leakage and thankfully we haven't had any of that. Autumn is scheduled to go back to school this coming Monday {with the exception of sitting out during P.E.} and her followup with the neurosurgeon is in October.
Some people have asked me if I think Autumn will remember any of this as she ages, Some have even suggested that they hope she doesn't. I think that she will and I hope that she does. I am documenting it here to ensure both, I want her to remember how incredibly brave she was. Autumn was fully aware of what was going on and of what the surgeon was going to do. She knew what to expect going in and had a smile on her face as they wheeled her back. I want her to remember that. I want her to know how strong she is - she conquered brain surgery - and to remember that when something seems to tough to beat. There is nothing this girl can't do - I want her to always know that.
Chiari Malformation is something that Autumn will always have - there is no cure. This surgery is the only known treatment, at this time, to stop the progression of symptoms and give children and adults with Chiari a better quality of life. I will always be concerned about what is going on in that beautiful head. I will always be worried that her symptoms may return, that her herniation may worsen - that she may have to repeat this process one day. But for now, she is happy, she is healthy, and she is able to sleep though the night and eat without vomiting. Whatever may come her way - I know Autumn will have no problem conquering it.
