BIG Changes!!

Today has been a busy day! After working last night, I came home this morning to a sweet little boy laying in my bed ready to watch Toy Story. I laid in bed and snuggled with him for a few minutes, and his daddy got him up to get ready for his teacher to come work with him. I had a dentist appointment this morning at 11, so I decided I would lay down and try to get about an hour of sleep. As soon as I closed my eyes, my phone rang. It was Johns Hopkins. The nurse on the phone started out by telling me how sorry she was, and at that point I knew it was not going to be good. The scheduler that scheduled Carter's surgery only scheduled one surgery and he is having two. The problem is that Johns Hopkins is a leading medical facility in the United States and O.R. time plus the fact it is taking multiple Doctors to do Carter's surgery is just plain hard to schedule. She basically told me there was no way to keep April 10th (less than 4 weeks away)as the date for Carter's first surgery. We would need to come up NEXT weekend and have the surgery on March 27th or go on the waiting list again. We have waited over 6 months for this surgery and the older Carter gets the harder and less successful the surgery will be. So going on the waiting list is just not possible. Brandon quickly got on the phone with his work and I talked to my work. I booked a new flight and called The Childrens Home, where we hope to be staying. The Children's Home is currently booked, but we are praying HARD they will have a room free up by next Saturday. Not only do I not want to have to pay for a hotel, but the hotels are not walking distance to the hospital and with Carter being so sick I can not imagine having to catch a cab to go to our hotel to take a shower. Fortunately, my parents are coming up for the first week, so we can put our stuff in their room and shower in their room.

So the new plan is we will leave next Saturday the 23rd for Carter's BIG surgery. Sunday we hope to get unpacked and settled in. Monday and Tuesday are full of appointments and Wednesday will be surgery day.

Carter will have 2 surgeries while we are there. The first surgery will be his osteotomies. Our pelvis is round and Carters pelvis is open like a book. They will break his pelvic bone in four places and try to close the book. Making his pelvis more round. He will go to PICU after surgery and for 4-6 weeks our Doctor will come in and stretch Carter's pelvic bone. This will allow for new bone growth and make his pelvis round. During this 4-6 weeks Carter will be in traction flat on his back not able to move. This is an extremely painful surgery and process, so they will keep him sedated for most of the 4-6 weeks. After 4-6 weeks when they feel the pelvis is closed as much as they can get it Carter will go back to surgery. He will then have his bladder placed inside his body and a metal plate placed to hold the two sides of his pelvis together. He will go back to PICU after this surgery and will remain in traction until his bladder and bones have healed. This could take anywhere from 2-6 weeks. Once the healing process starts we will start reducing his pain medication and allow him to go through the withdrawal process from being on so much sedation and pain medication for an extended amount of time. Once he is through this, we hope to get discharged! Our hope is that we will be home in June.

Just writing all of this is hard. There are so many risks with the surgery. One being that Carter may not be able to walk afterwards. He will have to relearn head control, how to sit-up and how to walk all over again. Talking about my 2 year old going through withdrawal brings tears to my eyes. The fact that I will not be able to hold him for over a month scares me to death.

Thank goodness for Faith and an almighty God. Without my faith, I would not be able to deal with any of this. We know we have some very tough days ahead and this journey is about to get really hard, but we also know it has to be done for Carter to survive and he will be in the best hands in the world. I know Carter will fight with all he has and he will get through this. Thank you for all of your prayers for Carter. Keep them coming! He needs them now more than ever!!!


Carter says Thank you from the bottom of my heart for all of your prayers!!

“ O Lord my God, I cried out to You, And You healed me. ”
- Psalm 30:2