Tuesday, August 12, 2014

The Countdown to Cleft Palate Repair Begins!

Well everyone, we are officially 4 weeks away from palate repair and I'm starting to get anxious! It has been so wonderful these past few months letting Will just enjoy being a baby and not having to worry about surgeries, taping, and endless doctors appointments. I know we still have a month before the surgery, but in the last few weeks we've been meeting with the doctors and discussing the procedure, so it's made it all feel very real and very near! Here he is this week:

Will's surgery is set for September 9 (11 days before his first birthday), during which the surgeon will repair both his hard and soft palate as well as the other side of his gums, and the ENT will place ear tubes. Dr. Warren will also be doing steroid injections in Will's scars since they've healed much thicker than we'd like - the injections should help accelerate the healing process and help minimize the scarring on his lip. The whole thing should take about 3 hours. He will once again have 3 weeks of restrictions post op - arm restraints, no bottles, no binky. Luckily, he'll be able to go back to eating purees and very soft foods within a few days. Definitely not looking forward to another 3 weeks of restrictions!

For those wondering about the palate repair procedure itself, I'll try to explain. First, here is a picture of Will's open palate so you can what it looks like - there's just a big hole that goes all the way back.

For the repair itself, Dr. Warren explained that he will take tissue from each side of Will's existing palate, basically cutting a thin layer from each side and folding it over itself to repair the hole. He also does a detailed repair of the muscle in the back of the throat, which is also split open, by pulling that back together so that Will is able to form proper sounds for speech. Without repairing the muscle, children with cleft palate often experience many speech issues that require extensive speech therapy and even additional surgeries because they aren't able to make the necessary sounds. Up until Dr. Warren explained this to me, I actually hadn't even thought about the muscle as part of the repair - I always just assumed they closed the hole in the roof of his mouth and that was it. Dr. Warren said that he has perfected a technique (spearheaded by Dr. Cutting, whom he studied with) that has a greater than 98% success rate, which means there's a 98% chance that no additional surgeries will be needed. For comparison, the typical cleft team has a success rate of 80%, and the best cleft teams have a success rate of about 90%. So I'm feeling very confident that Will is once again in the best possible hands!

So for now, I'm going to focus on enjoying these last 4 weeks before surgery, and then take recovery one day at a time. Plus, planning for his first birthday party (I'm thinking superhero theme is appropriate) will at least help keep me busy with something fun! And don't forget that we are asking for donations to two awesome cleft charities in lieu of gifts for Will's 1st birthday, so please check out his fundraising pages if you'd like to donate! Thank you!

Smile Train: support.smiletrain.org/goto/smilesforwill. This is a fantastic organization that provides training and funding to empower local doctors in developing countries to provide free cleft surgeries in their communities. Each $250 raised will provide 1 complete cleft surgery.

Cleft Kids, Inc.: http://www.cleftkids.org/store/p34/Will%27s_First_Birthday_Fundraiser%21.html. This is another amazing organization that provides care packages for children undergoing cleft surgery. $20 will provide one care package to a child.

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