Monday, January 03, 2011

Some Tips Following Bone Graft Surgery

When we learned back in August that Rachel would be having her bone graft, I immediately went on a search for other families that had already endured this surgery. I searched and searched for personal blogs, message boards, somewhere I could ask my questions and get answers from another Mama that had already walked in these shoes.

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...
Length of Surgery
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.

Dietary Restrictions
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!

Physical Activity/Restrictions
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.

Pain Management
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.

Nasal Stents
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.

These things were the things I felt most important to share and offer some advice.

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.


frgdanc said...

You are amazing Darcy!

Kari Marchelli said...

Thank you for that post Darcy! Very informative. Riley's bone graft is a long way still but it's nice to read a head to understand what might be coming.

Jas said...

Im from Singapore and a mom of a 11th months old cleft baby. Your blog is indeed informative and thats the reason Im following it. Its almost the same in Singapore where cleft parents does not really share about it, luckily my son has a very good cleft team.

Anonymous said...


Thank you so much for the information. I have not been able to find any information on revisions of the nose on a cleft child until now. She looks absolutely amazing and it is so encouraging.

Jennifer Wilkinson Photography said...

Thank you so much for your post. My daughter is going for her team meeting Monday and we will find out how soon her graft will be. She will be 8 years old on the 18th so its anytime now. And your right there is not that much information out there that isn't from the medical field and that basically all sounds the same. This was very useful and has brought my anxiety down quite a bit!!

Jennifer (UCLP) Mom to
Ashley (UCL &AR) 8yrs
Wyatt (UCL) 4yrs.

Jennifer Wilkinson Photography said...

(thoguht I left a comment so if you get two from me sorry! :)
My daughter Ashley (turning 8 on June 18th) has her team meeting on Monday and we will be finding out how soon her bone graft will be. And you are right there isn't enough "real" stories from BTDT Moms out there. Your post has helped a lot. THanks so much - may have more questions after Monday!
Jennifer (UCLP) Mom to
Ashley (UCL &AR) 8 yrs
Wyatt (UCL) 4 yrs

Tina said...

Thanks for this post about the surgery. My daughter is having a alveolar bone graft in the morning and this was informative and comforting to read. Thanks!

Mis-Wen said...

Thanks for your insight and encouragement. We will be walking this road next month with out daughter who is 7. Praying for good results and a SPEEDY recovery for my little one :)


KGold said...

Great information; our son is one week post bone graft today. Your blog is great! Ours is Your soft food diet ideas were super helpful!!!

Rachel said...

Thank you so much for posting this!! I just found out today that my 6 yr. old is ready for her graft surgery, so I have been searching for info online and came across your blog. Very informative and I'll definitely be getting some styrofoam cups, I wouldn't have thought of that. I'll be glad when this is behind us!

nonanona2 said...

Hi Darcy! Thank you for the information it kind of helped me relax a little bit because im 15 and going to have my bone graft done on oct 9 (less then 3 weeks left im nervous) but i have a question how long did it take for rachel to go back to school? Because i dont want to miss a lot then ill have a lot of work to do -.- but once again thank you and it will mean alot if you would answer my question.

Rick said...

Thank you for telling your daughter's story. My son (9 years old) is having his bone graft surgery done in 2 days. I, too, have had a hard time finding anything on the internet relating to his procedure. It helps to look at your photos, read about your experience and learn from your ideas. Our surgeon is telling us that our boy will need to be on a liquid diet for two weeks followed by 4 weeks of soft food. The soft foods don't worry me too much, but 2 weeks of liquids only has me concerned. I'm not sure how I'm going to keep him full. I've been stocking up on smoothie ingredients, protein drinks and soy milk. He doesn't usually like soup, but he may change his mind after two weeks of smoothies! Anyway, thank you again for your blog. Debbie

Tiffany Ziesmer said...

Thank you! My sons bone graft is on may 22nd I am trying to get as many ideas as I can...thank you again this was great!

Krishna Rao said...

thank you darcy...very informative...i have alveolar bone graft surgery day after tomorrow...looking forward to it...hope it wouldnt be so painfull...

Mutti said...

Great post -- very helpful! Just a quick question -- had your daughter had any reconstruction before this surgery? I'm trying to anticipate whether we'll have the nasal involvement you describe or not. My daughter's lip and nose were previously reconstructed and that surgery did briefly involve stents, so I'm hoping we will skip this step this time. Any info you can provide will be helpful.

Lori S. in Illinois

Sherry S said...

Great post. My daughter had her first bone graft surgery yesterday. She is in a lot of pain and has a lot of swelling of her face. The doctors precribed Vicodin which is very strong. I asked for a lesser nicotic and he said for this kind of surgery she would need this. I asked about tylonol with codine and he said it is not as good. I gave my daughter a half dose of the Vicodin. It helped a little bit, but I would rather have the tylonol with codine. My daughter can't walk to the bathroom without crying of pain. I am going to call the doctor and insist on tylonol.
Sherry S in New Jersey

Bhavna B said...

This is great information! My son is 8 yrs old and Dr has recommended bone graft surgery. We are debating if it is necessary. It help to hear what you went through. It is inspiring and I may start a blog also. Thanks!

Heather Bowlin said...

Thank you SOOO much for this post. I find that I forget every question I want to ask the docs at the time of pre-op appointments. My sons surgery is less than a month away. I am a nervous wreck, but you have made this SOOO much easier for me. You answered every question I have had. Thanks again!

Cindy Hutton said...

My son has his surgery this Friday August 29...he is really nervous and so am I. I feel so bad here he is perfectly healthy and we have to put him through this pain. Although I know it needs to be done I'm really suffering from the mommy guilt.

Ronda said...

Darcy, cant thank you enough for your blog. We have felt pretty much "on our own" even beginning with trying to find support and advice when our daughter was a baby! Here we are looking at surgery #2 next week, and we have the same "you're alone, go figure it out' feeling. I got online trying to find ideas for a liquid diet for a child, because our doc says no chewing for 3 months! I found your blog so very helpful! @cindy hutton, I also had the feeling that i was taking my perfectly healthy chlld and putting her through torture. As a matter of fact, when we were searching for surgeons, I asked one of the nurses if this bone graft was absolutely necessary, and she looked at me as though I had 3 heads, and then made me feel guilty for even asking such a question. Seems that no one really understands the emotions involved unless you are a fellow parent of a child with a cleft. I pray that yours went well, and I rejoice that Rachel's went well, and I pray for a similar outcome for Kasey. Thank you all for posting.

Jennifer Bayes said...

Ronda, so funny that you say it seems nobody understands unless you've been through it yourself...I remember when my daughter went in as an infant to have her lip repaired and I cried because I felt like I was trying to 'change' her.
My daughter just had her bone graft done on November 28th. The surgery itself went well and we had an incredible surgeon. All the information he provided to us was amazing but nothing is enough to fully prepare you for what you will go through. I really didn't realize the recovery process would be so long...telling my 10 year old daughter she is not allowed any Christmas goodies was not a good feeling :( and the award for worse mother of the year goes out to...Me (well, at least that's how I felt).
Granted some of our struggles come from the fact that my daughter will not eat any the mushy food diet has been a major struggle. What I used to fill her up a little is a 3/4 scoop of protein powder in her milkshakes.
My daughter is a month in to her recovery and she has her next follow up the first week of January...fingers crossed it comes with great news of things she can reintroduce into her diet.
My daughter's frustration comes from not being able to eat what she wants and the constant nagging at her from me...'brush your teeth' 'swish with salt water' 'put that food in the back of your mouth' 'don't run'...she was also quite embarrassed going to school with a baby spoon (I found this worked best for her). We had some practice 5 months ago when they extracted 8 teeth to prepare her mouth for the bone graft.
I am truly amazed at how much of a trooper she has been and can't believe how very strong she is. She hated the taste of the pain medication with Codeine (fruit flavour...of course) so much that she begged us to please give her Advil only. She would rather be in was awful but I couldn't torment her anymore than what she was already going through so I respected her wishes. I always knew when the pain medication was wearing off, my daughter would start crying and freaking out at me...I couldn't do anything right.
To all of you mom's out there...all I can say is be patient, be strong and when you feel like you can't take it anymore...think of what your child is going through....because we all know that we would do anything to change spots with them and I can assure you that those little monkeys are so much tougher than all of us.

Marcus Fillion said...

Thank you so much for sharing your story. What an intense procedure for such a little girl to go through. I can't imagine how you must have felt that first night, especially since Rachael was under-medicated. This is so helpful for anyone else in the same position. Thanks again and good luck to you both. |

lucy munoz said...

hi my sone just had the bone graft surgery yesterday. The doctor told us he could only have a liquid diet for the first three days then after puree or thick liquids? Besides broths what else can he have? any ideas?

Gabriel said...

Thanks for your advice and blog information! Our beautiful son is having surgery next month and I'm a bit anxious about it. He too does Tae Kwon Do and doesn't want to take any time off. Hopefully the recovery will be a quick one!

andrea chiu said...

Thanks for sharing your article and for giving us the chance to read it. It is very helpful and encouraging. Visit my site too.

Deepta said...

Thank you!
bone graft in a few weeks- really appreciate your perspective

Unknown said...

So glad to have come across this post. Our daughter Alexis,7, is having her surgery Friday. Although it will be a tad bit different as they are using a protein base instead of a bone graft from the hip, I was glad to read on the post opt food and drink recommendations. Plastic and foam items will be purchased. What great advice.
Thank You

karifabi said...

Thank you so much! After 5 years you are still helping moms of kids with cleft feel more informed and prepared. My boy is 7 1/2 years old and will go under his bone graft surgery to repair his cleft palate in 2 months top. He was born with a bilateral cleft lip and complete palate. I am petrified by fear of him being in pain (again), but reading your blog has helped me a lot and put me at ease somehow. I refused to read blogs when I learned about his cleft when pregnant and have avoided them up until now because I didn't want to be even more scared or cry more, but I felt the need to do it this time as I rather be prepared and plan ahead. Thank you so much again!