The Vincent Family: Cooper's Surgery

On Monday, December 10, 2012, our sweet "Little" Cooper went in for sub-occipital decompression surgery of the foramen magnum and C1 vertebrae, and to have tubes put in his ears. To give a brief run-down of WHY he had to have the decompression surgery...Because of Cooper's Achondroplasia, one of the commonalities with it, is "narrowing" of the spine (aka spinal stenosis), hydrocephalus, and compression on the spine, and Arnold-Chiari Malformation. The purpose of the decompression surgery is to release the compression on the spine, hence the term "decompression", by removing excess bone, or bone that is putting pressure on the spine. By removing the excess bone, there is hope that it will open up the spinal canal enough to help the excess fluid on/around the brain drain.

Cooper had to be at Primary Children's Medical Center on Sunday, December 9, 2012, for some pre-op labs. His geneticist also ordered some x-ray's because I noticed he had some kyphosis going on in his lower back. While we were up there, I wanted to make sure the bulge in Cooper's back was nothing to be worried about right now. The x-ray didn't show any "over-lapping" or "crowding" vertebrae. But, to be on the safe side, and because of the "small amount of room" Cooper has in his back/lower spine, the geneticist was going to have the head orthopedic surgeon who specializes in backs, take a look at the x-ray. Most likely, we will be heading to Shriner's in Salt Lake for bracing, because of the "small amount of room". Right now, we are just waiting for the application process to go to Shriner's. Once that is approved, we will set an appointment for Cooper.

As you can imagine, the night prior was AWFUL!!! I didn't sleep at all. Cooper would only sleep next to me. It was almost as if he knew something was up, because when I tried to put him down, he would cry. As long as he was right there next to me, he was fine. 4:45am came WAY TOO EARLY on Monday morning! Cooper had to check-in at Same Day Surgery (strange, I know!) Monday morning at 6:30am. It seemed like we waited FOREVER!!!! By the time Cooper finally got called back, it was about 7:30am. It wasn't a nurse, or a PA, or a MA that called us back. No! It was Dr. Brockmeyer, the neurosurgeon doing Cooper's surgery. At about 8:05am, the anesthesiologist walked us back to where we said "goodbye"'s and "I LOVE YOU"'s. Talk. About. Hard. I was trying to be really strong and not show my emotions. Until I looked at Zane. He had HUGE tears rolling down his cheeks.

Between the tubes, which was the first procedure, and the decompression surgery, we were told Cooper would be in surgery about 1.5 hours. Once we checked in at the surgical waiting room, we went and grabbed a quick breakfast. By the time we got back upstairs, the ENT had come in to tell us the tubes went in great. He did have a lot of puss/infection and fluid in his ears, and that he most likely has some hearing loss. Dr. Meier said he did the air test, where they blow air in the ears and check the hair for vibration...with Cooper, there was no vibration. Dr. Meier scheduled Cooper to go in for an audiogram in January.

At about 10:30am, we got a call from the OR nurse. She told us everything was going well. She told me it was going to be a little longer because of the amount of narrowing Cooper had. Not quite the 1.5 hours we were originally told. We sat there. And waited. And waited. And waited. It was so nerve racking. My mind would not stop all the "what ifs". I would look at my phone and see pictures of my Little Man and get all teary eyed. It was awful!

FINALLY at 12:45pm, Dr. Brockmeyer came into the surgical waiting room and gave us a brief run-down of how surgery went. Of course, he's going to tell us everything went well, because that's what we want to hear. He sugar-coats everything before he gets to the bad. He said he hasn't "seen that amount of narrowing in a 6 month old achondroplastic baby in a VERY LONG TIME!!!", and that's why it took so long. Cooper had so much bone putting pressure on his tiny spine, he wasn't prepared for that amount going into the surgery. I asked when we could go back and see him. He was still in the OR...they were putting stitches in, and then they were going to keep in the OR until he was able to come off the ventilator. He said to wait about 30 minutes and then call back. Now that 30 minutes was the LONGEST 30 minutes. It was so frustrating. I was glued to my phone and the wall clock. At 30 minutes, the secretary called back to ICU to see if Cooper was there. He had just barely got there, and to give them another 45 minutes because he wasn't off the vent yet. UGH!!! I just wanted to go back and see my baby already!!! I was beyond frustrated. My emotions were getting the better of me by this time. The what ifs got worse.

FINALLY at 1:30pm we got the go ahead to go back to ICU to see my baby! That was THE LONGEST WALK. The surgical waiting room is on the south end of the hospital. The ICU is on the north end of the hospital. I so wasn't prepared to see what I saw, when I saw him. My sweet Little Man was in SO. MUCH. PAIN. He kept crying out in pain. His voice was hoarse. His tiny hands were bruised from trying to get 2 central lines going. He had wires and monitors everywhere. It was so hard to see my baby in so much pain. (They had Cooper in the PICU because of his OSA, CSA, the decompression surgery itself, and to have a nurse right there because he was on the vent for the duration of the surgery, and about 30 minutes post-op.)

For severe pain, Dr. Brockmeyer was giving him Morphine. Once the pain was controlled, he was getting Oxycodone for severe pain, and Tylenol and Motrin alternating every 3 hours, all orally.

Once the nurse got his pain under control, I was able to hold him. Awe, that was so hard. He would move his head. If I held him with your arm under his neck, he would cry out in pain. If I held him up on my chest, he would cry out in pain. Any slight movement of his head, he would cry out in pain. It was not only a very hard adjustment for me, but for Cooper as well. But, he was such a trooper! So strong. So resilient. He wasn't going to let the surgery stop him. Once I laid him back down, the nurse rolled him to his side and let us take a look at his incision. HOLY COW!!! I wasn't prepared for that. It seriously looks so BIG on his tiny body. It's down the center of the back of his neck. It's about 4-5 cm long. He had 11 stitches.

At about 11:30pm, Zane and I headed back to our hotel (we stayed at the University Guesthouse at the U of U). It was less than 5 minutes from the hospital. I kept going back and forth on whether or not I was going to stay at the hospital with Cooper. I was SO EXHAUSTED from not sleeping the night before, my stress and anxiety levels, and emotions, I decided, with the help of my AMAZING mother-in-law, that I was going to go back to the motel and sleep. She told me Cooper was very well taken care of at the hospital, so if I needed some sleep, to go back to the motel. I'm so glad I did! Once we got back there, I showered to try to help me relax a little, and crashed.

On Tuesday morning, when we got to the PICU, I freaked out! His room was packed FULL of people. Several doctors, surgeons, PA's, LNP's, nurses. I thought something was wrong. Thank goodness, nothing was wrong. They were doing their rounds. There were several medical students that were in the room as well. They had to go over Cooper's whole history, why he had to have the surgery, inspect his wound, go over his meds, vitals, weight. I kind of thought it was a bit ridiculous, but then again, I'm just the parent. :)

Once they were done with their rounds, and the majority of them left, the PA on the floor told us that because Cooper did so well throughout the night, and because his pain was well controlled, he could go home. So, they started the procedures to go home. They were writing up all the orders, with a goal of getting out before noon! I wasn't complaining any at all! But, I was a little worried about being so far away from PCMC if something were to go wrong. At about 11:35am, we were loaded in the car and on our way home. It was a wonderful moment! I was a little terrified of putting Cooper in his carseat, but he went in, no problems. He didn't cry, fuss...nothing!

Our "Little" Cooper was such a "Little" trooper through this whole ordeal. Not only did he amaze Zane and I by coming home 24 hours post-op, he surprised the doctors and nurses at how strong and resilient he was! The first 12 hours were really rough with pain control. Once they got that under control, he did so well. He was playing with his toys, babbling to everyone, smiling, giggling...just being our "Little" Cooper.

Once we got home, and back into our routine, Cooper was back to his normal "Little" self. At 3 days post-op, he was rolling around on the floor. I couldn't be happier with how well he did. He amazes me! Cooper and this surgery taught me so much. I never realized just how resilient babies/kids are. He showed me over and over that he wasn't going to let the surgery keep him from being him. How fast he bounced back...truly amazing!

Cooper is now 17 days post-op and is doing wonderful! You would never know, other than by looking at the back of his neck, that he had a HUGE operation. He is my "Little" hero!