Sheehan had surgery on Friday. This was his seventh surgery. All for his cleft lip/palate. He’ll have at least two more that I know of over the next five years, but probably more than that. His brother’s only had five surgeries and his sister two, so Sheehan’s winning. Woo! Go, Sheehan!
From my point of view, this surgery seemed a little more rough than the others he’s had in the past. He doesn’t agree, as far as pain goes. His bone graft surgery was much more painful (removed bone from his hip to put into his palate). This one is much more visible on the outside due to an external device they’ve attached to his head. They had to break his jaw and drill pins into his skull for the device, so in spite of how this sounds and how it looks to me, he has very little pain just four days later. I’m thankful.
The device that’s pinned to his head will stay there for about six weeks. The metal “halo” reaches out past the front of his head like the brim of a baseball hat and extends around to the sides just to above his ears. You can see a photo of a girl with hers, HERE.
He’s knocked the apparatus twice so far which sent shocking pain throughout his head. It makes my body shiver just thinking about it. Like when you see a kid skin their knee or elbow on cement. The first time, he hit the tray sitting above his hospital bed and a second time when we got in the car to drive home from the hospital. I’ve knocked baseball hats right off my head multiple times, so I can only imagine how difficult it is to get to used to this thing.
Tomorrow he’ll have the rest of the device hooked up by the orthodontist so that a rod extends from the center of the “brim” down to in front of his mouth. It will connect to wires linked to his upper jaw inside his mouth. Then we’ll begin turning the apparatus one millimeter a day for 20 days. That’s two centimeters his upper jaw will move in 20 days. Holy crap! That never really hit me until this morning. Two centimeters is a lot of movement. His upper jaw is mobile. He can literally move it around – not that he’s intentionally tried.
Immediately after surgery, they brought him to pediatric intensive care where I was waiting for him. It was a very large room with double glass closing doors that we didn’t have to share – which was very nice compared to what we’ve experienced in intensive care in the past: screaming toddlers, nurse activity and beeping machines all night, leaving Sheehan barely able to sleep. This room was heavenly in comparison.
When they wheeled him in his bed into intensive care there were nine people in the room – various surgeons and doctors and nurses, in a flurry of activity. It was all a little overwhelming as I was already a bit nerve-racked just waiting for him to get through surgery. At every other surgery, they’ve taken him to post-op where there were many other patients divided by curtains, so the abundance of doctors and nurses and activity seemed spread out among many patients. All this activity around my son made me nervous. Was this normal? Should I be worried?
He woke up soon after arriving and moaned a painful cry and grabbed for his head. They pulled his arm away before he could touch the halo and gave him pain medication. He slept. He woke up one other time like this soon after.
Then, as is typical for this type of surgery, he threw up. He took turns between sleeping and throwing up at least 12 times over the next 24 hours. Since most of the surgery was in his mouth (to connect the internal part of the device) he had swallowed a lot of blood. They had to frequently suction some out that first day. At one point, I stood next to his bed holding his hand, watching the tube suction the contents when things began to get close. Very close. Like everything was closing in around me. My ears began shutting down and I could only hear muffled noises. I felt like I was in a cave. I was going to faint. I had only ever passed out one other time in my life – the day after I donated blood in college. I was in the shower and felt that cave sensation. I reached for the handle of the shower door and fell right out and banged my head on the sink. I had no control. It was really weird. I immediately woke up. Apparently, I hadn’t eaten enough food after draining my veins of blood.
As I stood by Sheehan’s bed with my ears going deaf, I announced that I was going to pass out to the nurse. I hunched my way over to the chair as I hung onto the bed rails fearing I’d fall. The other nurse brought me a cold wash cloth. I asked what I was supposed to do with it. She told me to put it on the back of my neck. So I sat there leaning back in the recliner with my feet up and a cold cloth on my neck while my son slept, puked and writhed in pain. I felt weak. Not physically, but in my mind. Like, I wasn’t strong enough to stand by my son as he went through so much pain. As I reclined and watched them suction, I told myself that it was okay. Seeing my kid in so much pain and all that blood coming out of him, any parent would do the same. I’ve been through these post-op situations seven times and I had never even gotten woozy before. It was just really overwhelming.
Sheehan woke up on Saturday at 4:30am and was doing much better. For the first time, I noticed a cool, rotating rainbow above his head on the ceiling. Ooh, it was so relaxing to watch. So then this happened.
So my friend Tracy, sent me the scene.
That’s me playing guitar.
We came home on Sunday. He’s been pretty comfortable, not needing any pain meds except the occasional Tylenol or Ibuprofen. The hardest part for him has been adjusting to sleeping with the halo on. He has to sleep propped up and on his back. No turning at all.
He’ll be on a soft food diet for the next six to eight weeks. Mac & cheese, oatmeal, smoothies, ice cream, etc. He’s not allowed to chew. He doesn’t seem to mind this too much. He was actually happy that he doesn’t have to eat any Thanksgiving food this week – he doesn’t like any of it.
He’ll be pretty much housebound for the next six to eight weeks. He doesn’t want people’s eyes upon him. I don’t blame him. He’ll get out for weekly doctor appointments and on the one or two nights we drive around town looking at Christmas decorations and sipping hot chocolate.
Fortunately, we homeschool, so taking time off isn’t a big deal. For kids in school, they suggest getting a tutor for the few months they have the device on. He’ll have it on until after the new year, most likely. We’re hoping they’ll be able to remove it without surgery. Depending on how it goes, it could possibly be removed in the orthodontist’s office. I guess we’ll see.
He’ll have another surgery sometime next year on his lip. Then it’ll probably be time to move onto his sister’s surgeries. Her cleft is only on one side, so won’t require quite as many surgeries as her brothers. Hopefully, I’ll be even more experienced by then and won’t require a recliner and a cold compress to get through the recovery. Maybe I’ll bring a guitar and play for her to get my mind off it all.
Have you had kids go through surgery? Have you ever fainted?
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