Going with the Flow...
The sun rose to a much brighter day today for Carter. During surgery, they discovered that one of the two screws holding Carter's plate in his pelvis had fallen completely out of the bone. The tip of the screw was pushing up against the bone, and the other end was hanging out of his surgical incision. We were very fortunate that it was within a hair of going through his urethra (opening from the bladder to the outside). Carter's Doctor attempted to place a larger screw at a different angle, but his bone was too soft. For some reason Carter's bone was "mushy". It was not strong enough to hold a screw. It should have had plenty of time to heal (12 weeks) and calcify. All of his nutritional labs have been fine and they honestly have no idea why the bone did not heal and hold the screw. They had to open his incisions back up and remove all of the hardware that they placed with the last surgery. They stitched Carter's pelvis bone together and placed external fixators to help hold his pelvis in place. They also placed the same type of cast on his legs that he had taken off on Monday back on. This does mean Carter must lay flat and still on his back. We are not sure for how long though. We are praying it will not be as long as last time. It is already killing us not to pick him up.
He has done so well with all of this. His little body is so exhausted from everything that I do not think he has the strength to fight right now. He has laid completely flat and only moved his arms. His body seems to be relieved the pins and plate have been removed. The last 12 weeks have been miserable for Carter. Do not get me wrong, he was thrilled to be home, but he had a lot of fussiness and was very uncomfortable at times. We put it off, thinking it was him weaning off all of the medications and the fact that he could not move around on his own. Looking back, both Brandon and I , think something might have been wrong with the plate and screws from the beginning. Obviously, it is something we are not sure of, and we could be completely wrong. We are just thankful he has been remarkably better since they came out.
He may need to have a plate placed in the future, but only God knows. The purpose of the plate was to hold his pelvis bone together in the front. Without something to hold it together his pelvis is at risk for opening back up which could cause his incision to come open, and cause his bladder to come back out. Right now a plate is not an option for him. We are relying on God to take care of his pelvis and his entire body. This has never happened to another patient at Johns Hopkins, so they are still trying to figure out what to do. Even though Carter has had multiple complications, we know we are in the best place for Carter. Carter's Doctor has done more of these surgeries than anyone else in the world. He is the one who has done the research, studied literature and wrote the book on exstrophy. He is the world's expert. He has promised they will get Carter fixed, and that his quality of life will be great. It is just going to take time, and they are unsure of how long it will take.
Learning to go with the flow is something I struggle with often. We had already made so many "mental" plans for Carter to enjoy some of the summer. I had already bought sunblock so he would be able to go to his Nana's and swim as soon as we got home from Baltimore. This is one of Carter's favorite things to do. We had talked about taking him to the splash pad, the zoo and doing other things Carter would love to do. We are learning how to let those things go, and just go with the flow. Learning to allow God to make the plans is hard. It is one of the hardest things we deal with. We feel like Carter is missing so much. He is missing the joys of growing up. He is missing out on his childhood. We know God has a special plan for him and in His time earthly enjoyments will come. We are thankful for the 12 days we enjoyed at home, and we can not wait to return. Although it was extremely unexpected, we will sit back and patiently wait. We will wait for God's plan to unfold. We will wait for Carter's Doctors to come up with a plan of care. We hope when the sun rises tomorrow Carter will be getting ready to be transferred out of the PICU to a regular room. As always...To Him be the Glory!
Just to show you how good our God is here are a few pictures throughout the night...
When we first got to go back and see him in the PICU still on the ventilator.
Just got off the ventilator, still needing a little bit of oxygen.
Completely off of oxygen playing with his toys.
Taking a nap today, trying to block out some of the lights with his sunglasses!