Luke's recovery after surgery was difficult as expected. We were expecting a call to see him at 12:35 but the call never came until 2:30 and Rhonda was very worried and almost in tears.
The first thing he said when he came around from the anesthesia was, "Mommy, can we go home?" He passed all of his nervous system tests...gag reflexes, coughing, etc. These nerves were in the vicinity where they were working and were the biggest concern. He can move his toes and fingers so his nervous system is still in tact. I asked him to name his brothers and sister and he said in a ventriloquist-style voice..."EriJonnyNKir".
From 2:30-4:30 he threw up once and was in a great deal of pain at which point we had seen enough and asked for the morphine. From 5:00-6:30 he slept and at 7:00 he started watching Spongebob cartoons; I will be searching for a Star Wars movie because, after all he is "...Luke Skywalker and I am his Faaather!"
Just like you all, we constantly check this site to see if anyone is reading these updates. I've had alot of calls and we enjoy reading all the comments. Thanks every for the prayers and wishes!!
Wednesday, July 16, 2008
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!
"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!
Tuesday, July 15, 2008
Luke Arrives at the the Ronald McDonald House
What a great place...http://www.ronaldshousehershey.org/. It's very close to a large bed and breakfast and is totally run by volunteers and donations. It's unbelievable the needs provided to families here. I will now find myself donating to them because at the moment they provide food, bedding, toys and any necessities at no cost. Tomorrow's the BIG DAY.
Wednesday, July 9, 2008
Shriners provides Luke a brace for treating Scoliosis
Luke is very proud of his "solar" brace, although he can only stand to have it on for 45 min to an hour at this point.
Monday, July 7, 2008
Sunday, July 6, 2008
Parents shruggle with decision who should operate
For three weeks we had researched plenty of websites, talked to many people, had professional opinions...you'd think we would know what to do. However, we now had TMI...too much information. There were minor contradictions in opinions with what seemed like great consequences. We had changed our minds 3 times...chiari institute, Hershey Medical, Johns Hopkins...then back to Hershey.
The Chiari Institute (TCI) surgeons were kind enough to e-mail me the past few days on the differences between surgical procedures (hopkins vs hershey). Hopkins received high recomendations previously from one of the TCI surgeons; yet, another CI surgeon explained his preferences of a dura patch from Luke's own body over the other alternatives of a pig cadeaver and a snythetic material, which are more prone to leaking. We totally trusted TCI's opinions and they were critical in our decision making. Additionally, a pass by Johns Hopkins Hospital in Baltimore quickly discouraged our comfort-level to live there for a few days. This wasn't critical but we did weigh the environment: the seemingly unsafe section of Baltimore vs beautiful central PA. Some also suggested for Luke's recovery period might be an issue in that Hopkins and other inner city hospitals are usually understaffed, even though their surgeon staff may be top-notch.
Ultimately, after 2 agonizing days while camping at Raystown PA, we felt most comfortable with Hershey Medical and Dr. Iantosca. We hope we made the right choice.
The Chiari Institute (TCI) surgeons were kind enough to e-mail me the past few days on the differences between surgical procedures (hopkins vs hershey). Hopkins received high recomendations previously from one of the TCI surgeons; yet, another CI surgeon explained his preferences of a dura patch from Luke's own body over the other alternatives of a pig cadeaver and a snythetic material, which are more prone to leaking. We totally trusted TCI's opinions and they were critical in our decision making. Additionally, a pass by Johns Hopkins Hospital in Baltimore quickly discouraged our comfort-level to live there for a few days. This wasn't critical but we did weigh the environment: the seemingly unsafe section of Baltimore vs beautiful central PA. Some also suggested for Luke's recovery period might be an issue in that Hopkins and other inner city hospitals are usually understaffed, even though their surgeon staff may be top-notch.
Ultimately, after 2 agonizing days while camping at Raystown PA, we felt most comfortable with Hershey Medical and Dr. Iantosca. We hope we made the right choice.
Tuesday, July 1, 2008
Second Opinion from Johns Hopkins Neurosurgeon, Dr. Weingart, confirms treatment options
Dr. Weingart was recommended to us by the Chiari Institute. He was very friendly and answered our questions, but what we hoped would be a confirmation of our first opinion left us confused and torn. There were two components of the surgery that differed between the surgeons. The first was the type of material that would be used to patch the lining of the brain. A synthetic patch was used by Dr. Weingart, whereas a peice of Lukes own tissue would be used by Dr. Iantosca.
Also, Dr. Wiengart explained the use of titanium bracket to replace the removed section of skull and create more space for the cerebellum. Dr. Iantosca did not replace the skull that would need to be removed to operate.
Also, Dr. Wiengart explained the use of titanium bracket to replace the removed section of skull and create more space for the cerebellum. Dr. Iantosca did not replace the skull that would need to be removed to operate.
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