Cleft Lip & Palate Bone Graft Surgery - Part 1
Have you ever built something up in your head, planing every detail while preparing for the worst? I spent years thinking about Jude’s bone graft surgery. Ever since my 18 week ultrasound where they discovered my babys bilateral cleft lip and palate I knew he would need this major surgery. From all accounts the bone graft is one of the most difficult and painful surgery with the longest recovery time. Hours and hours in surgery, days in the hospital and weeks recovering at home on a liquid diet; not so appealing.
Was I excited for my autistic son to go through that? Heck No! Was I excited to get it over with after all these years of waiting? Absolutely!
Jude’s bone graft was in May 2019 just after he turned 9. In preparation Jude wore braces for over a year to line up his centre gum-line section/premaxilla. Braces were amazing for him. His front teeth straightened out and the gum-line lined up really well. Until this point, Jude’s mouth was still open to his nose and sinus cavity on either side of his front teeth and the line behind his front teeth. I’ve included a picture of his clefts at birth since it can be challenging to figure out whats connected and whats not.
During the surgery bone from his hip is used to fill in the cleft gaps on each side and behind his premaxilla. All the skin is restructured to make the gumline one piece.
Surgery Prep
Knowing your child will have a major reconstructive surgery is nerve wracking. The fact that Jude is autistic with limited verbal skills adds another layer to the stress. While preparing for the surgery I contacted the children’s hospital child life group. They asked dozens of questions about my son in order to make his experience smooth and more enjoyable.
We decided on a few key things that would help: early morning surgery (which turned out a given with long surgeries), a private pre-op room, explain everything they’re doing in pre-op, have Jude help (press buttons, put on the bp cuff, etc), mom accompanies him to the surgery suite and waits until he’s asleep, mom and dad helps in the immediate recovery room.
I made a long list of tasks that needed to be done before the big day. Here’s some of the items on the list:
call Child Life
borrow a wheel chair
get Jude’s hair cut
call the hospital the day before for the surgery time
plan babysitters, drivers and helpers for the other 3 kids
grocery shop for easy meals and snacks for those at home
do all laundry in our house - sheets, clothes, everything!
Make sure Judes bed is easy to get in and out of - He sleeps on the top bunk so we switched him to the bottom bunk
buy a Nintendo 3DS XL and some games for his recovery
download movies and music onto his ipod and our phones
buy Pokemon novels for his recovery
make sure we have apple juice, gatorade, gingerale, yogurt and other liquidy smooth food
plan his night before meal
talk to his teacher about the weeks he would be gone and the school work he’d miss
do required blood tests
pack Jude’s suitcase
pack Jude’s activity bag
pack my suitcase since I’ll be staying at the hospital
pack my day bag for during the surgery
pack dads day bag for during the surgery
call the hospital the day before for his arrival time and fasting instructions
Definitely look at this surgery social story. It’s awesome for special needs and “typical” kids alike.
Night Before
"I want a FEAST!” - That was Jude’s response when asking what meal he wants the night before surgery. It still makes me laugh to think of his extremely animated request.
With the help of my sisters we threw a true to Jude feast; spaghetti & meatballs, hotdogs, cheese pizza, plain chips, rootbeer, smile fries and lots of ketchup. He typically eats really well so I didn’t feel too bad about this carb and dairy explosion. He spent the evening with his cousins, friends and family. The feast was a huge hit!
After dinner we made sure everything was packed and ready to go.
Suitcase - check! Headphones and chargers - check! Healthcare card - check! Cold pops in the fridge - double check! You know, the essentials.
Jude took a bath, cut his nails and made silly videos with me. We also got the other kids ready for the next day; laid out clothes, made lunches, lined up backpacks and outerwear, etc. Despite the major surgery only hours away, Jude didn’t seem nervous.
The Morning of Surgery
We checked into the admissions desk of Alberta Children’s Hospital at 6:30am on surgery day and then made our way up to the 3rd floor surgery unit. Jude couldn’t eat past midnight but could have clear fluids up until a few hours before his surgery. Having some apple juice made the morning much more enjoyable for Jude. We checked in with the front nurse and they brought us back to his private room.
The first thing he did was change into his hospital gown and pants. They gowns are big and flowy so tucking it in often helps keep it closed (especially for the girls). If the hospital clothes don’t fit just ask for a different size.
Jude was surprisingly optimistic and bubbly during this stage. He’s normally a really happy kid but you never know how the stress of surgery and recovery will effect a person. Luckily, he willing participated in doing his BP, taking meds, getting dressed and waiting for different nurses and procedures.
His Private Room
The in-hospital wait for surgery wasn’t too long or painful. They weighed him, took his vitals (blood pressure, heart rate, temperature, O2 stats, etc.), gave him Tylanol, put numbing gel on his hand where the IV would go, asked us medical questions, reviewed the surgery and told us what to expect after.
Throughout this Jude didn’t even notice or worry about what was about to happen. He was completely engrossed in an activity and remained calm the whole time.
Whats the secret, you might ask?
Well, besides calling child life and setting things up with them, the secret sauce was a new Nintendo 3DS XL and some games. We knew he wanted a Nintendo DS because it has the most Pokemon games out of all the different gaming systems. We purchase a Pokemon themed DS and a bunch of games he wanted. Jude was beyond excited! However, he wasn’t allowed to play them until the day of his surgery.
Long story short, Jude was enthusiastically counting down the days until he got his DS. This made surgery so much more enjoyable for him. This is the type of Nintendo 3DS XL we bought. It’s definitely been a worthwhile investment for our Pokemon loving kid.
The private room was pretty spacious for a pre surgery room and even had a private attached bathroom. We were quite comfortable waiting for his name to be called. If Jude was having an out patient surgery he would have been brought back to this room to recover after surgery. Since Jude would be admitted and was staying for a few days we knew we wouldn’t be coming back to this room.
When we got closer to surgery an orderly came and took us to the surgery holding room. Jude usually loves taking his ride through the fish decorated hallway, however, today he was preocupied with this new toy. I certainly wasn’t going to complain. This hallway-ish holding room is at the entrance to the surgical suites and it’s a great place to doctor watch.
While here we met with Judes surgeons, anesthesiologist, residents and main nurse. They answered our questions and made sure we were prepared for the surgery and told us what to do afterwards.
Jude’s plastic surgeon is an older, petite gentleman with a soft voice and a comforting demeanour. He’s been with us since before Jude was born and has preformed 3 major reconstructive surgeries so far. I’m so grateful to know that my boy is in such talented hands.
After speaking with his doctors I got all dolled up in my hair cap, shoe covers & gown so I could go back with Jude.
FYI - yellow combined with florescent lighting is not my friend. Ok, I think it’s mainly the florescent lights and my ghostlike complexion.
When it was time they brought Jude and me into the surgical area and into his operating room. Jude laid on the bed with his stuffed dog and his blanket. I held his hand and gently touched his forehead while they placed a mask over his face. He stayed calm as the anesthesiologist jokingly spoke about the different kinds of milkshakes Jude should try. It was a helpful distraction for both of us.
There were probably a dozen people in the room busily preparing and monitoring, and in amazement I recognized how all these people and machines were brought together to help Jude. We truly live in an amazing time.
Watching him drift off to sleep in that spaceship-looking sterile room was one of the hardest things I’ve had to do as a parent. But I watched as his eyes finally rested closed and refused to ficker open again. I thanked all the doctors, gave Jude a lingering kiss on his forehead and followed one of the nurses out of the room.
And then I waited.
Keep reading about Jude’s surgery
Hello!
I’m Kate and I’m a mom of four. Since 2010 we’ve had one baby born with a bilateral cleft lip and palate and three children diagnosed with autism. Parenting certainly hasn’t been what I was expecting - it’s been harder (like A LOT harder) and much more wonderful. My world has expanded and knowledge deepened as I’ve spent the last decade raising these four special kids. Supporting other moms of autistic and cleft children is my passion. Here you’ll find information, strategies and first hand experiences to help you navigate these special challenges on-the-go and in your own home.
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Welcome to Holland is an insightful poem highlighting the experience of becoming a special needs parent. Every parent should read this poem, especially those with autistic or cleft children. Being an autism parent is like living in a foreign land you were unprepared for, but you are not alone, so many of us are right there with you.