I'm packing this morning... there's so much for a family of 5 to be gone for a week or more! YIKES! Gary has taken the boys to get haircuts and get the last minute things we need. I am amazed at how quickly this is all coming together.
I'm even more amazed at the outpouring of love and prayers from so many people. We are so blessed and so thankful!
I'm not sure how I'll be able to update everyone on Luke's progress... not sure if I'll have internet at the hospital or if I'll have to wait each evening when I get back to the hotel? Either way, I will try very hard to keep everyone in the know!
Til Next Time ~Amy
Monday, July 12, 2010
Sunday, July 11, 2010
Grace, Grace, God's Grace
We will leave tomorrow early afternoon to go to Birmingham. Gary and I have reserved a room at a nearby hotel so we can walk to and from the hospital and also so it's easier to get Drew and Ava back and forth. I thought this weekend would be so anxious filled and worrisome for me. But, praise be to God, it has been a wonderful, restful, fun, eventful weekend! Friday evening, we all went out to dinner at Olive Garden, one of my favorite restaurants. After we got home and got the kids in bed, a couple from our church came over and we played monopoly! It was very fun and we had fun chatting late into the night. Gary and I haven't done that in quite a while!
Yesterday, my neighbor and I left home around 8:00 in the morning and drove 2 hours south to Destin, Fl to go to the outlet mall. I can't even tell you how much fun I had. Every second was enjoyable! We had a great time shopping and getting to know one another better. I got so much stuff for everyone in the family!!! I don't think I've ever had SO MUCH FUN SHOPPING!!!!!!!!!!
After we finished shopping (at 7 pm!!!!!!!), we headed to the beach. Oh. Oh. Oh. It was glorious. The waves crashing on the white sand, seagulls flying overhead, a strong wind whipping my hair everywhere. The smell and taste of salt... There is no place on earth that is so evident of the majesty of God. pure blissfulness.
We ate dinner at a restaurant right there on the beach. We ate on the patio facing the ocean. Such a wonderful time!!! We didn't get home until 11:45 last night.
Today has been a day of worship and family time. After the worship service, the elders and pastor annointed Luke with oil and laid hands on him as they prayed for him, his doctors, the surgery, the recovery, and our family. The Lord has been so kind to me and wrapped me in a blanket of peace that has brought such comfort. I am not afraid. I am not scared. I know my son is in the hands of the great I AM. The Creator and One who knit Luke together in my womb. What have I to fear? Nothing, absolutely, nothing.
Yesterday, my neighbor and I left home around 8:00 in the morning and drove 2 hours south to Destin, Fl to go to the outlet mall. I can't even tell you how much fun I had. Every second was enjoyable! We had a great time shopping and getting to know one another better. I got so much stuff for everyone in the family!!! I don't think I've ever had SO MUCH FUN SHOPPING!!!!!!!!!!
After we finished shopping (at 7 pm!!!!!!!), we headed to the beach. Oh. Oh. Oh. It was glorious. The waves crashing on the white sand, seagulls flying overhead, a strong wind whipping my hair everywhere. The smell and taste of salt... There is no place on earth that is so evident of the majesty of God. pure blissfulness.
We ate dinner at a restaurant right there on the beach. We ate on the patio facing the ocean. Such a wonderful time!!! We didn't get home until 11:45 last night.
Today has been a day of worship and family time. After the worship service, the elders and pastor annointed Luke with oil and laid hands on him as they prayed for him, his doctors, the surgery, the recovery, and our family. The Lord has been so kind to me and wrapped me in a blanket of peace that has brought such comfort. I am not afraid. I am not scared. I know my son is in the hands of the great I AM. The Creator and One who knit Luke together in my womb. What have I to fear? Nothing, absolutely, nothing.
Thursday, July 8, 2010
Surgery Date is set!
Today we met with Dr. Rozzelle in Birmingham. We scheduled Luke's fusion for Tuesday, July 13th at 0730. We have to be at the hospital at 0530, though, for all the prep and waiting around part.
Gary and I plan on going up with Luke, Drew, and Ava on Monday and staying in a hotel room until Luke is released from the hospital. {When Luke is in the ICU, Gary and I will be able to visit him for 2 hour increments, every 2 hours until midnight (10-12, 2-4, 6-8, etc). We are not allowed to spend the night with Luke when he is in the ICU. He will be in ICU for about 1 day, then he will be moved to a regular pediatric room. Once he is in a regular room, Gary and I will be able to spend the night with him; and Drew and Ava will be able to visit him during sibling visiting hours.} Gary and I will take turns spending the night with Luke and the other will stay with Drew and Ava at the hotel. We feel it is important for our family to be together as much as possible during this time. My mom, Marsha, and sister, Lacey, will be coming to B'ham to help us with Drew and Ava. Gary's mom, Joan, may be coming, but isn't sure just yet.
The details of the surgery are:
It will take 4-5 hours.
They will take a bone graft from his rib cage to put in his C1C2 space. This will stimulate the bones (base of skull down to C2) to grow together, thus the FUSION.
Internally, there will be pins and a rod put in to hold everything together as a guide and a stabilizer for the bones to grow towards one another.
Externall, a halo will be put in place around the outside of Luke's skull to hold his neck in a neutral position and prohibit any movement of his neck. (Think of how a cast keeps broken bones together so they can grow back together correctly.)
The risks of the surgery:
His spinal cord could be damaged during the surgery.
There are blood vessels running on either side of the spinal cord; if either of them are damaged, Luke will never wake up.
Possibility of stroke (if there is a blood clot and it goes to his brain).
And, of course, as with all surgeries, there is always the possibility he won't survive the operation (very small possibility).
After the surgery is over, he will be in the recovery room for 1 hr. They will then move him to ICU. He will be in ICU for about 1 day and then he will be moved to a regular pediatric room. We expect to be in the hospital 7-10 days. Dr. Rozzelle wants Luke's pain totally under control (only taking tylenol), wants him walking around, and somewhat back to normal in order for us to be discharged.
We covet your prayers. For Luke, as he is not a very good patient (he gets very angry and sometimes a bit violent), and his acceptance of the halo. For Drew and Ava as they will be interacting with Luke and trying to understand what is going on. For Gary and me: patience, endurance, strength. For the dr's and nurses as they care for Luke and guidance as they perform this surgery on his little body.
I will try to keep everyone updated as we go through this surgery and time in the hospital. Please continue to pray for us, even if I'm not faithful in the updates.
Gary and I plan on going up with Luke, Drew, and Ava on Monday and staying in a hotel room until Luke is released from the hospital. {When Luke is in the ICU, Gary and I will be able to visit him for 2 hour increments, every 2 hours until midnight (10-12, 2-4, 6-8, etc). We are not allowed to spend the night with Luke when he is in the ICU. He will be in ICU for about 1 day, then he will be moved to a regular pediatric room. Once he is in a regular room, Gary and I will be able to spend the night with him; and Drew and Ava will be able to visit him during sibling visiting hours.} Gary and I will take turns spending the night with Luke and the other will stay with Drew and Ava at the hotel. We feel it is important for our family to be together as much as possible during this time. My mom, Marsha, and sister, Lacey, will be coming to B'ham to help us with Drew and Ava. Gary's mom, Joan, may be coming, but isn't sure just yet.
The details of the surgery are:
It will take 4-5 hours.
They will take a bone graft from his rib cage to put in his C1C2 space. This will stimulate the bones (base of skull down to C2) to grow together, thus the FUSION.
Internally, there will be pins and a rod put in to hold everything together as a guide and a stabilizer for the bones to grow towards one another.
Externall, a halo will be put in place around the outside of Luke's skull to hold his neck in a neutral position and prohibit any movement of his neck. (Think of how a cast keeps broken bones together so they can grow back together correctly.)
The risks of the surgery:
His spinal cord could be damaged during the surgery.
There are blood vessels running on either side of the spinal cord; if either of them are damaged, Luke will never wake up.
Possibility of stroke (if there is a blood clot and it goes to his brain).
And, of course, as with all surgeries, there is always the possibility he won't survive the operation (very small possibility).
After the surgery is over, he will be in the recovery room for 1 hr. They will then move him to ICU. He will be in ICU for about 1 day and then he will be moved to a regular pediatric room. We expect to be in the hospital 7-10 days. Dr. Rozzelle wants Luke's pain totally under control (only taking tylenol), wants him walking around, and somewhat back to normal in order for us to be discharged.
We covet your prayers. For Luke, as he is not a very good patient (he gets very angry and sometimes a bit violent), and his acceptance of the halo. For Drew and Ava as they will be interacting with Luke and trying to understand what is going on. For Gary and me: patience, endurance, strength. For the dr's and nurses as they care for Luke and guidance as they perform this surgery on his little body.
I will try to keep everyone updated as we go through this surgery and time in the hospital. Please continue to pray for us, even if I'm not faithful in the updates.
Wednesday, July 7, 2010
Tingliness
Luke woke up this morning with pain/tingling in both of his lower legs. I called Dr. Rozzelle's nurse but didn't hear back from her until this evening around 5. She said the pain is due to the compression of Luke's spinal cord. This symptom is NOT due to the permanent damage on his spinal cord, but rather, from the compression on his spinal cord from his C1 vertebrae. She scheduled us to come in tomorrow at 12:30. At tomorrow's appmt, we will set a date for Luke's surgery (likely to be early next week) and get all of the pre-op stuff done (blood work, history/physical, etc). We plan to explain the surgery and halo to Luke a day before the surgery. He is a worrier and will dwell on it and fret over it, so we think it best to tell him right before it happens. We have found a great website that talks about the halo and living with a halo. If you'd like to check it out, here it is: http://www.pixelscapes.com/halo/
Please pray for us as we begin this journey.
Til next time, ~Amy
Please pray for us as we begin this journey.
Til next time, ~Amy
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