soft cleft palate surgery

Lindsey - posted on 05/27/2011 ( 7 moms have responded )

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anyone go though a soft cleft palate surgery...ian has his in july and im super nervous!!??

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hi every1 hope all your little ones are doin great my little girl was born with cleft palate she had it repaired in june this year was scariest time of my life she is 1 in few weeks and i cant believe how well she is doing :) i think its fab theres groups and things on here for other people going thru the same things :)

Heather - posted on 10/02/2011

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@ Sarah- are all 3 issues connected? What are PE tubes and why did she need them? My 2nd old goes in Wednesday to repair her Microform Cleft. We also found out during her last cleft team appt that she may have a soft palate issue as there is air escaping through her nasal cavity when she speaks. She also has very tiny ear canals (not sure if the 2 are related) that requires special cleaning every 3 months under microscope since the canals are so small it doesn't push the wax out. The Dr mentioned that if my DD would need tubes, she wasn't even sure if the smallest of tubes would fit.

Sarah - posted on 07/17/2011

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We are home after surgery. It was much more difficult than I had expected - I don't want to scare anyone, the issue was with Alison's breathing after the surgery.
While we were waiting for the surgeon after the surgery was completed, I heard the code alarm, and I completely panicked. We had been waiting for several minutes, and I kept thinking "If that is Alison, I don't know what I will do." When the doctor came in, he told us that the surgery itself went well, but that there were issues after they took her off of the vent. We went out into the waiting room where we waited for them to call us back to recovery, and we waited for 45 minutes without hearing anything. My husband went to ask what was going on, and he was told that they were taking her to the Pediatric Intensive Care Unit. I had flashbacks to her heart surgery, and Iost it. When we were finally admitted to see her, the nurse asked us if anyone had talked to us yet, and told us that she was only there for observation - and I felt like a million ton weight was lifted off of my chest.
Her first night was really rough. She doesn't respond well to some of the more basic pain meds, so they had to push narcotics. Her breathing was fast, and she had a nasal canula with oxygen. She was one angry little girl the first two days, but once the pain went down a little, she started seeming more like herself. She was so swollen at first, and it took till the third day for that to start resolving. She had a stitch in her tongue in case she had any more airway issues, and that didn't come out till Friday morning when she was moved to the floor. She had a little more trouble with breathing Friday night, but since then she has been okay. We finally took her home yesterday.
I am so glad that it is over. She has restraints, but is handling those pretty well. I will keep you updated, but if you have any specific questions, don't hesitate to ask.

Thanks for keeping us in your thoughts, Nicholle!

Nicholle - posted on 07/12/2011

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For Sarah and little Allison. You are in my thoughts and prayers tonight. Praying for a quick easy surgery with no complications and minimal pain. Allison your mommy's heart will be in that room with you. Be strong both of you!!! Lots of prayers your way

Nicholle - posted on 07/08/2011

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Sarah, Wow that is so much for both of you! Open heart surgery....that is much worse on the SCARY meter! And now the soft palate surgery. You both will be in my prayers. I have done a lot of reading and recovery will be tough with this one...my plan is one day at a time...and hopefully the 3-6 weeks will fly by. let me know if you want to chat sometime. I will be praying for Allison on Thursday!!!!!!!!!!

Sarah - posted on 07/07/2011

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My 10 month old daughter - Alison - has her surgery on July 13th. She already had open heart surgery when she was 2 months old, and that was terrifying. This one doesn't seem as scary, but I am super nervous about the recovery.
She was scheduled to have her soft palate repaired June 8th, and had PE tubed placed in her ears a the same time. The PE tubes were placed, but she was congested and after the surgery began it was cancelled. Apparently her oxygen level desaturated several times and they were worried about reactive airway syndrome. Hopefully the next surgery actually happens.
Good luck to you and to Ian. And to Nicholle and Julianna as well.

Nicholle - posted on 06/23/2011

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Hi there I am new to this. I have a daughter with soft cleft palate surgery due to happen on July 20. I feel like it is impending doom so I hear ya on the super nervous. My daughters name is Julianna. She is almost 10 months. How old is your son?

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