Friday, July 1, 2011

Maxillofacial Surgery - Bone Graft

A Little History

Long, long ago on the day Sophie was born (almost 10 years ago) a plastic surgeon came and talked to us about what would be done medically to help Sophie repair her lip, palate and nose. It sounded like surgery after surgery but it sort of sounded far off in the future so we didn't worry about it. We were focused more on keeping her fed and changed and happy.

Sophie had her first surgery when she was 2 months old. They tried Adhesion surgery to pull the lip together to prepare for the actual lip repair. Since the cleft was so large however she broke the adhesion and we ended up having to tape her lip for a few weeks so the skin of her lip would be prepared for the Lip repair.

This lip repair was pretty much only cosmetic. The palate was still wide open so liquids and such still went right up into her nose. The palate surgery was done when she was about 1 year old. I guess because it is a much more extensive surgery they wait until the baby is a few more pounds before that one. During this surgery the ENT also put in ear tubes which is a very common need of children with clefts.

We have needed ear tubes replaced twice since the palate was done but these surgeries are very short and she goes home pain free in just an hour or so.

Over the years we have had a team of doctors that we see on a somewhat regular basis. They make sure she is hearing well, speaking clearly, and developing normally. Hearing well has been our only issue so far. This is why the ear tubes have had to be replaced a few times. We are lucky that there hasn't been any need for speech therapy. Sophie has been a talker from a very early age and it is amazing that she is able to speak so clearly.

At about 7 years of age they decided it was time to start visiting an Orthodontist to help push the jaw out a bit and prepare her mouth for the next surgery. She started off with an extender and then braces and she has enjoyed the few months she has only had a retainer while she waited for her surgery.

The Surgery

This is the first of all these surgeries that Sophie has really been aware of what was going to happen. She has sat through all the doctor visits as the surgeon explained the procedure and why it was necessary. She is old enough to understand what it all means. She was very nervous and I don't blame her. It sounded very extensive and painful.
What scared her the most however was the fact that they were going to put the IV in while she was still in pre-op.  She heard that and suddenly was visibly shaking. She couldn't focus on anything but the IV and the nurse who was supposed to do it. After one failed try, the nurse decided to give her a calming medicine and leave it up to the Anesthesiologist once they were in the operating room.

The calming medicine made her very foggy and she didn't even realize the surgeon had come in and marked her face and hip so they wouldn't make a mistake on the side they were working on.
She was just happy they let her take her cat, Crookshanks, with her. They even gave the cat a little blue hat just like her. I am glad they gave her the calming medicine she was really nervous and it helped her relax and pass the waiting time in pre-op much easier than it could have had.
Almost 5 hours later we were brought into the recovery room to see her. She was a bit shell shocked and was very groggy but very talkative all the same. She loved it that Crookshanks also had a bandage on her hip just like hers. This cat was her best friend through the entire experience. It didn't leave her side from the moment we walked into the hospital. 
Once they were sure she was fully awake and that she was breathing well and temperature was back to normal. I guess they keep patients very warm in the OR. The OR is actually kept very cool for the doctors but patients do better when they are kept warm.  She was sweating profusely and needed time to cool down a bit.
We spent the rest of the night in our own room in the pediatric ward of the hospital. I brought along the DVD of Harry Potter and the Goblet of Fire. Sophie has read the book but the boys haven't so she hadn't been able to watch the movie yet. So this was her opportunity. We only made it through about half that night before tiredness and drugs kicked in and she requested it be turned off and we head to sleep.

I really hate hospital stays. Nurses were in and out all night checking this and that or giving more medicine. And because Sophie was on an IV she was very well hydrated and therefore needed frequent trips to the bathroom. For a girl who has just had a bit of her hip bone removed this isn't easy to do.  So we were up often throughout the night walking her back and forth to the bathroom. But the walking is good for her. It is needed to aid in the healing process.
Sophie must have a high pain threshold. She did request pain killers but kept to the Tylenol with Codine rather than the morphine. She was determined to go home and did what she needed to do in order to get there. 

She gets to spend the next week or so working with a sore hip and the next two months she is to keep to an all liquid diet. She can't chew anything. They don't want her to use her new jaw at all. So we are going to have to find ways to feed her more than just milk and juice. In the hospital she was able to eat some jello, yogurt and very soft ice cream. Two months on liquids will be interesting. Thank goodness we have our new super blender so we can make lots of green smoothies.
I tried to get a picture of the actual work done but it is hard to look inside. She isn't supposed to stretch that top lip too much or else it will disturb the sutures. It is also hard to tell what is the graft and what is the glue the surgeon said was used to make sure the sutures stay in place.
This girl is doing amazingly well. She went home within 24 hours and is walking around all by herself. Very slowly and with a very pronounced limp at the moment but she is trying so hard to be independent. I think we have to work at slowing her down and making her rest more.

She is such a brave, strong girl! I am really grateful for doctors and what they are capable of doing!


5 comments:

Montserrat said...

Sophie is amazing! What a hard thing to go through but she has been a trooper and handled it all so well.

Kodelle said...

Brave, brave girl!

Jackie said...

Thank you for posting on Emily's blog. I just saw your comment today and immediately went to your blog to see how Sophie did with her surgery. I'm crying as I type this because we're about to go through the exact same thing with Emily next week! Sophie is so brave. I love that she brought Crookshanks with her and I'm going to tell Emily to pick out a stuffed animal (you've inspired me). Emily is just 7, so she's not a fluent reader yet (she's getting better) but she also loves Harry Potter and we're going to bring a bunch of movies with us for her to watch while at the hospital. I'm so glad you left a comment. I hope Sophie is having a comfortable recovery. Please feel free to reach out to me via email - jackie@jacquelinedooley.com. I'd love to know what Sophie is eating :) All the best, Jackie.

Aly in va said...

Glad all is well. Praying for a full speedy recovery.

susan from nc said...

Thank you for posting this! Our daughter is having this same surgery at Duke in 2 weeks, August 26th. The Ortho is actually putting brackets from braces on her top teeth (this week aug 13) so he can wire the splint as part of her surgery. She is 8 years old. Thanks again for helping me know what to expect!