My search was unsuccessful as far as those places.
Eventually, I did find one Mom through a Facebook page who's son had had a bone graft this last Spring. I sent a private message asking if I could ask questions. It took weeks for her to answer. And when she did answer, all of her answers to my questions were extreme, it was borderline anxiety producing thinking that's the road that soon laid ahead for Rachel, and for us.
One of my goals of keeping this blog has not only been to keep family and friends up to date with Rachel and her going ons of having been born with a cleft lip and cleft palate, but it has also been my goal to help journalize the cleft specific things to offer help, ideas, and encouragement to all the families that are behind us on this road. I've 'met' many a wonderful Mama's all across the United States, and some even outside of the U.S, where we share the common bond of having a child born with a cleft of some sort.
For the past six weeks, I've been jotting down notes, tips, and suggestions for all of YOU, who will someday in your child's future face a bone grafting to the alveolar ridge. I hope that this post is of help to someone...
The length of surgery will be different for every child depending on the severity of the alveolar cleft. When I asked at our pre-op appointment for an estimate as to how long surgery would be, we were told 2-3 hours, but that our plastic surgeon doesn't stop until he's completely happy with his work, which is a nice quality to have in a plastic surgeon when having work done on ones face. :)
Rachel's surgery took two and a half hours from start to finish, and that included a nose revision.
Following surgery, Rachel was placed on a soft food/no chew diet. She was allowed juices, ice cream, soups. Once home, we did applesauce, ice cream, frozen soft yogurt, pudding, mashed potatoes, soups, shakes, graham crackers broken into pieces and soaked in milk.
At our post op appointment, just 5 days after surgery, Dr. Martin told us we could do a soft food diet that included soft foods such as mac and cheese, scrambled eggs, refried bean cups, broken up soft french fries, anything soft that could be chewed with the back teeth.
To get protein in Rachel, we tore up slices of cheese, tore up lunch meat, cooked and diced hot dogs, I took spaghetti and cut the noodles into tiny pieces with my kitchen scissors and served with marina sauce.
After another post op appointment, we went a little further. Cooking and dicing up chicken tenders, mandarin oranges broken into pieces, apples diced up into bite size pieces.
She was not allowed anything hard or sharp, such as chips or crackers. And nothing that required taking a bite with her front teeth, things such as sandwiches (although I did make a PB&J sandwich and cut into tiny pieces to eat in the back of her mouth), chicken wings, pizza, etc, etc.
Rachel was on a soft food/ easy to chew diet for 3 1/2 weeks.
One of the things I found helpful was using plastic spoons. One of the local frozen yogurt places has these great spoons that I save and use in the girls' lunches. They came in handy for Rachel's recovery. They have a very skinny end that allowed for successful dropping into Rachel's mouth the week following surgery. We did not want to take any chances of a metal spoon hitting that sensitive bone graft area, so we used the plastic spoon, and we fed her the first week post op.
Rachel was also not allowed straws or sports top bottles for 3 1/2 weeks following surgery. I found the best thing was to have paper cups sitting on the counter for her to use. A paper cup, if the upper gum or lip should be hit, would be less painful than a hard plastic or glass cup. When she returned to school, I sent a paper cup and a water bottle to sit on her teachers desk.
Feeding Rachel was been VERY difficult. Coming up with things for her to eat has been very stressful. She's become very picky since surgery and sadly has lost 2 1/2 lbs, which on a little girl, is very noticeable. For almost two weeks after Dr. Martin lifted all food restrictions, Rachel was very hesitant to eat. Getting her to eat was very difficult and very stressful as we did not want to see her loose any more weight. But once her fears subsided, and she even began chewing and taking bites with her front teeth, she's been an eating machine! And that's okay with us!
Rachel was up and walking hours following surgery. It is said that the most painful part of having a bone graft is the pain that comes from the donor site, the place where the tissue was taken, and in Rachel's case, it was her left hip. From Day 1, she had no limp, no pain to complain of from her hip, nothing.
Once school resumed, two days shy of being two weeks post op, Rachel did not participate in PE, or recess. The chance that a ball hit her nose was too great, and would be extremely painful. So I packed her a back pack of new coloring books, new crayons, a tablet of paper, and some other fun things to do while she was 'benched'.
She resumed Tae Kwon Do class, two days shy of it being three weeks post op, and that might have been a little bit too soon, as she woke up the next morning complaining of her leg (specifically the leg where tissue was taken) hurt. It was probably too much jumping and kicking about.
When Rachel was just a few days shy of four weeks post op, she went back to playing at recess and is participating in some PE, she still sat out on the days that PE involved a ball. LOL.
We're thinking that once she returns to school next week, after our three week Christmas vacation, she can go back to playing without any limitations, at that point, she'll almost be eight weeks post op.
Rachel received morphine while in the recovery room for pain, but once in a room, and upon being discharged, she received Tylenol with Codeine. We were told that the only reason she was kept overnight in the hospital was due to the pain and the access of having better pain control as an inpatient.
There were two times in the night that I had the nurse page the on call doctor because it was evident that the pain medicine was not enough. Sadly, our pages were never returned and come morning, we discovered that Rachel had been severely under medicated through the night. When she should have been receiving 10ml of Tylenol with Codiene, she was only being given 2ml, the dosage appropriate for that of an infant. Once we got the proper amount of pain medicine in her system, things changed drastically for the better.
If you should suspect that the pain meds you're child might receive following a surgery might not be enough or doing it's job the way a pain drug should, be persistent about bugging the nurses to page the doctors on call, double checking they are paging the right doctors on call, even questioning the nurse that what she is administering is the proper dosage.
We were sent home with Tylenol with codeine, the proper dosage. And for the first three days, we gave it like clock work, every 4-6 hours as directed. For two nights, we even set our alarm in the night to get up and give her something in her tummy and give her a dosage of pain medication. It was important to break the pain cycle.
With Rachel, you could tell the pain meds began to wear off about 30-45 minutes before the next dosage was due. By Post Op Day 5, we were giving Rachel regular over the counter Tylenol. And by 1 week post op, she was pain free.
Bruising / Swelling
When I initially asked at our Pre Op appointment as to how much bruising we should expect with the nose job, I was told that because they were working with cartilage and not bone, there would be no bruising. That was not the case for Rachel.
Rachel's face began to swell the day after surgery. The worst of the swelling was at 3 days Post Op. And then from that day on, the swelling started to slowly decrease.
As for bruising, the bruising surfaced under her eye and her upper cheek bone on the side of her face where the majority of the work was done (her right side) on Day 4. It was a yellow bruising which usually is an indicator of deep tissue trauma. The bruising was gone within a week.
The morning following surgery, Rachel hated those nasal stents with a passion. She screamed, she hollered, she wanted them out! She continued to complain about them, but never once did she try to take them out.
Our plastic surgeon explained to me at the first post op appointment that Rachel's nose had a lot of scar tissue and scar tissue has a tendency to go back to it's original shape very easily. So he always prefers to leave nasal stents in place anywhere for one to three weeks post op. He also told us that it could take up to 6 months Post Op for the nose to settle down and become the new permanent look.
Rachel had nasal stents for twelve days. She was not self conscious about them. She went to church with them in, went out in public with them in, even went back to school for one day with them in.
Returning to School
This is one area that will be different for everyone. We scheduled Rachel's surgery for a time in which she was off track from school. She missed NO school due to surgery, or the time it took to recover afterwards. Rachel returned to school on the very first day back from vacation, which was 12 days post op.
However, if you're reading this post, and you have questions, perhaps something I didn't cover, please leave a comment, or sign Rachel's guest book and leave your email address and I will email back!
I would love to be able to answer questions or put aside any fears you might have if you're on the brink of having a bone graft done to your little one.