We arrived late at the hospital due to not giving any time for an unexpected snow that made traffic slow. Honestly, I was glad we were late because usually you end up sitting in the pre-op room with your toddler for an hour to an hour and a half before the surgery. I think they ask you to come super early so they can make sure your child isn’t eating or drinking anything like they asked and so numerous medical staff can come in and get Evan’s medical history over and over. But it’s difficult to keep a toddler, one who hasn’t been allowed to eat or drink anything for hours, happy and entertained, in a pre-op room for that long.
Like before, the Rocky Mtn Hosp for Children staff were AWESOME. They engaged Evan from the beginning of our experience through the whole stay. Evan brought his favorite stuffed animal, a blue elephant, with him, and the pre-op staff did everything to the elephant (and his aunt Shannon) that they were going to do to Evan. They also let him play with the thermometer, stethoscope, etc. He LOVED it! They didn’t put the IV in until he was already asleep and when they did, it was placed on his foot (which was so much easier to keep him from messing with it!).
Evan’s surgery itself lasted about an hour and a half. The neurosurgeon had previously educated us on the procedure. Basically, they’d cut into his lower back, remove a bone (I don’t know if this was a vertebrae or what) and then test the various nerves they found, including whatever was attached to the spinal cord itself that was tethered to something it shouldn’t be. Once they explored whether the nerves were working as they should (some damage could have already been done to the spinal cord and nerves) and that the piece they were going to cut was not a nerve the body was using, they cut it. Both pieces would automatically “retract” from each other and the untethering would be complete. They’d then put the bone back in place and close him up. The neurosurgeon came out after surgery to let us know that it had gone well.
We were able to join Evan back in the recovery area about a half an hour later. He was groggy and wanted me to lay on the tiny recovery bed with him. He was easily entertained with his anesthesia mask (that was still attached to oxygen). They let him play with it almost the entire time we were there. I got “gassed” numerous times with it, elephant experienced it, and Aunt Shannon too. It smelled like pancakes/syrup because it had been butterscotch scented gas! Evan found it funny that he could “put us to sleep.” Interestingly, there was no bandage on Evan’s back. The surgeon used a super glue to close the incision and so no bandage was needed to protect the area!
We moved to the pediatric floor after our time in recovery. Evan spent most of Tuesday afternoon and evening laying flat on his back watching a Dora the Explorer DVD over and over. I probably have the four episodes memorized now! Who do we call when we don’t know which way to go? THE MAP! And Dora’s hit song “For the First Time” about riding a bike is quite catchy! Maybe I’ll karaoke it sometime! I shouldn’t complain though because it kept him entertained! I do appreciate that there is a self-efficacy message with her and not vague self-esteem. And Evan frequently says “I did it” like Dora does when he accomplishes something he deems hard, which is adorable!
I never thought my son would be successful at the “on your back for 24 hours straight” portion of this procedure, but besides two or three instances of him trying to sit upright, he did well. The second day his frustration of having to remain on his back (until noon) was shown by his behavior. He threw things and tried to hit me when I got close, but he stayed on his back! I had to get creative about consequences because time outs obviously wouldn’t work (he was basically already in a 24-hour time out) and Evan had many opportunities to say he was sorry! Evan’s pain was managed with morphine and Tylenol and by the second day, he was only requiring Tylenol.
The first night was difficult. Evan wouldn’t fall asleep unless I was laying in his hospital bed/crib with him. It was a short, narrow, and high bed so getting in and out of it wasn’t easy (especially while trying to avoid jostling Evan). Incidentally, Ryan, being the engineer he is and being all about safety and research, had looked up this specific hospital bed to find out its weight limit. Luckily it could handle Ryan or me laying on it. Evan fell asleep around 11pm and I was able to sneak over to my fold out bed. He slept until he woke up SCREAMING at 12:30am. He screamed and cried until the nurse came in and gave him more morphine. You could almost tell exactly when the morphine hit his system as he calmed down right away. Poor little one, I can’t imagine the pain and anxiety he felt…waking up in a strange place, his back being in pain…Evan finally settled back into sleep, after insisting that I once again lie next to him. The remainder of the night was a repetitive cycle of: falling asleep, then waking up to Evan crying, comforting him, then falling asleep. I eventually gave up on sleeping in my own bed as everytime I’d try to sneak over to it, Evan would wake up. I’d estimate that in total, I got three hours of sleep, max. I was a zombie the next day and not the most patient with the myriad of medical professionals that wanted to meet with us, ones I didn’t really feel were necessary to aid Evan’s recovery (the hospital social worker, the hospital dietician, the hospital financial person, etc).
By Wednesday afternoon Evan was allowed to lay at a 30 degree angle. As he did well with that, a few hours later he was propped up at a higher angle, and by Wednesday night was able to fully sit up. He was also given the go ahead to have “unrestricted movement” but this frightened Evan so he remained in his crib, sitting up or laying down. My mom was a saint and took the Wednesday night shift. She reported that Evan jabbered on and on for several hours in the middle of the night. She couldn’t understand much of what he said, but it seemed important to him! I got to go home and get some sleep, shower, see Ryan and Makenna, and have a break from the hospital.
Thursday morning Evan was encouraged to move around. He was scared to do much because he knew that it would hurt his back. The day nurse mentioned if Evan didn’t start moving more, he may not be discharged that day! We decided to carry him outside of the room and see if getting him out and about would help. We found a playroom nearby full of fun books and toys. What ended up being Evan’s kryptonite was finding a rocket on wheels that he could ride. Before we knew it, he was on that rocket and had forgotten all about his back. He spent over an hour riding that rocket up and down the hallway! And soon he was walking around (with help) and standing too. The neurosurgeon came soon after and cleared him to go home. That was music to our ears!
So far the hardest part of Evan’s post-hospital time has been riding in the car. I don’t know if it’s the car seat, the safety belt, the bumps on the road, or all combined, but something made it torture for him. So we’ll probably be homebound for the next few days while he makes progress, but compared to being at the hospital, we’re in heaven!!!!
Some cute Evan moments:
-Usually Evan doesn’t like having his blood pressure taken. This time they called them “leg hugs,” which Evan liked. A bit later, he was asking for more leg hugs!
-The first night Evan would not keep his hospital gown on. I could bribe him to put it back on in order to drink juice, but shortly after he was done drinking, off it would go! He went to sleep without it on, but promptly the next morning put it on and kept it on all day!
-Although he was the patient, he made it clear that he wanted to “hold Mommy.” This meant that when I laid with him, he insisted that he have his little arm under my neck to “hold” me.
-One of the best ways of keeping Evan entertained for long periods of time was having him watch a video on Nana’s phone. This was clip of Evan picking up leaves in our backyard that was approximately 3-4 minutes long. He loved it so much that he watched it over and over again (once for over an hour straight) and still asked later to watch it more!
-Evan couldn’t wait to talk to Daddy on the phone on Wednesday. I thought he’d tell him more about the hospital or what he had been up to. Instead, all Evan talked about was wanting to ride in Daddy’s car and go to Home Depot!
-Evan’s night nurse on Wednesday was a large male one. Evan was initially intimidated by him but after the nurse brought him a green popsicle in the middle of the night and taught Evan to fist bump, they were good friends.
We are thankful for everyone’s thoughts and prayers, emails, and text messages over the past week. We have felt loved, encouraged, and supported during this stressful time. A special thanks to Nana (for watching Makenna the first day and staying with Evan the second night), Shannon (for driving us to the hospital in the snow and for being with me during the surgery itself), and Shelly Estevez for watching Makenna Wednesday and Thursday (especially since it was a last minute request).