Luke's Chiari Decompression Surgery appears successful

Luke arrives at Hershey Medical Center at 6am. We navigated Hershey's check-in process and landed on the 2nd floor which is the pre-surgery area. His own garb was swapped for Tigger pajamas. He had played his Star Wars Nintendo DS game for most of his first hour oblivious to all the controlled stress going on around him. A few minutes after 7:00a he was given some medicine to loosen him up so the separation from Mom and Dad was less traumatic. As the medicine set in, he made his way to a drunken stupor...flopping around and banging his head on the side rail every time he attempted to sit up. At first it was uneasy to watch but once he started giggling and cackling, it was fun to see him so happy. I tested his awareness with my favorite question to all of my kids.

"Who loves You?" I asked.
"Yoouuu" he replied after a few seconds of eyes darting all over.

"Who loves Me?" I pressed further.
Nothing for 10 or 15 secs, then with a grin and giggle he said, "Jonny!!"

He was supposed to say "Me". Nevertheless, I felt more relaxed. He did for Mom and Dad what we were trying to do for him all morning. At that point, he didn't have a care in the world and he never noticed us staying back as they wheeled him into surgery. He was off to the most important event in his life.

The normal surgical procedure was to sedate him, give him an IV and put him to sleep. The first hour was spent hooking monitoring equipment to him, especially his spinal activity. Once they established reasonable measures, they began the surgery at about 9:30.

We had visitors in the waiting room around 8am. Sam Dean from our church had come by and spent the morning waiting with us. He was nearby for an educational conference and took the morning off to keep us company. Sam took our place in the waiting room while Rhonda and I went to get some breakfast. The food wasn't great but the company was when we returned. Julie Mills, a neighbor and also a friend from church, was there with Sam. She drove from home that morning also to be with us in any capacity we needed. We each took turns telling life stories and laughing like a bunch of hyenas. Having friends there to distract us from the serious nature of what was going on with Luke just one floor above us was an unexpected thing that was both welcome and timely, as if sent by God.

At 12:10, the neurosurgeon appeared to let us know the news was good. The decompression surgery was a success. He suffered no great blood loss and all the monitoring showed an immediate improvement in the flow of his spinal fluid. This is the exact point of relief where your heart takes an extra skip and your eyes excrete some extra tears. Even though we hadn't yet seen Lukey, we assumed things would be OK from this point on. Yes, there was the recovery process, but hearing the spinal fluid was doing what it was supposed to made it all worth it.

The doctor left and we all looked at each other with a sigh of relief. After some talk, Sam said his goodbyes and headed back to work. We didn't necessarily know Sam that well outside of church but we appreciated him so much for staying with us. On his way out, he ran into Pastor Joel Nogle and his wife Kathy. They were at a church conference in Richmond VA and left early to also be with us. We talked about the prognosis of all three of his disorders then moved to those light-hearted stories for some more laughs. It was a great day indeed to have so many friends call us and visit us this morning.

As of this writing, we have not seen Luke. At 1:30 he was still asleep and on a breathing tube. We expect to see him with his head bandaged and some swelling. The doctor anticipated a relatively early release Friday pending any complications. Leaving Friday will be a sign things went well. Some patients last 3 or 5 days, but Luke is a fighter and hopefully he'll be out earlier than usual. Luke will have to take it very easy for 2 weeks so as not to disturb the healing. He will receive another MRI in approximately 6 months. This will hopefully show an open cavity for fluid to flow more freely causing the Syrinx (cyst) partially or totally dissolved. Over time the Syrinx is expected to dissolve completely.

Heading back to the hospital now...hope to see lil' Lukey!