palate surgery coming up

Children and adults with cleft lip and/or palate issues

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palate surgery coming up

Postby heather » Wed Oct 10, 2007 2:30 pm

Eyson's palate surgery is coming up very quickly. I'm a little nervous about it, with it just being me and the kids. I have a few questions for those who have been through this before. How long was the surgery? How long was the stay in the hospital? What can I expect as far as pain? Is there anything that I need to be looking for that would indicate a problem in the healing process? You know...all the usual mom worries. I plan on asking his doctors all these questions as well next week when we go to St. Louis for his consultation. I'm sure they will give me great information, but I still prefer to get some feedback from those who have experienced it. Thank you so much! Heather and the Kids
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Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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Postby Augiesmom » Wed Oct 10, 2007 4:40 pm

Augie had his palate surgery on June 21, 2007. His surgery lasted about 3 hrs and we stayed in the hospital overnight. We went home the next morning. There was definitely pain involved in the healing process. We gave him tylenol with codeine for the first few days and then switched to regular tylenol. The biggest problem we had was getting him to take in any fluids. He just didn't want anything to do with any of the alternatives to the bottle we had. We started to get very concerned about dehydration and we called the Dr. She asked us to come in to see her right away. She gave us permission to let Augie go back on the bottle and you would not believe how many bottles he went through that day. For us the first two wks following the surgery were a little rough but we got through it and he healed great. Good luck. I am sure the surgery and the healing will go very, very well.
augustus "augie" (born 8/5/06 BCLP)
lip repair (11/21/06)
palate repair (06/21/07)
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Postby jdabliz2 » Thu Oct 11, 2007 12:14 pm

hi heather, we had aidans palate surgery 11-06, we stayed 1 night at the hospital ( which was the toughest night of my wife life ) they would only let her stay overnight but she made it through! aidan had a hard time drinking out of his haberman bottle, so to make it easier for him we used the mead johnson bottle which made it pooable for him to drink because we would actually squeeze the formula in his mouth then he would swallow it. he also had a hard time sleeping, we contacted our ped. and they allowed us to give aidan benadryl ( just enopugh to ease his pain and make him sleep ) i dont know if he ( or us) would have survived without it!!!!!! just to see him actually sleep was coomfort in itself!!!!! other than that, the surgery should last about 3 hours, recovery was 7-10 days, and before ya know it, runnin around like a little mad man!!!! i really believe that the whole thing is tougher on us parents than the kids, ( it is tough on them too though)
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Postby mookie59 » Thu Oct 11, 2007 10:52 pm

Taylor had her surgery on 9/18. The surgery lasted 3 hours. They took 1 parent back into recovery until she was taken to her room upstairs. She stayed only overnight.

(quick note here- I requested for Taylor to be given something to help her go to sleep before they took her back to surgery. Ask your doctor if they will let you go with Eyson or if they will sedate first. I did not want Taylor taken from me crying for me.)

In recovery she was not given Morphine this time per my request. The pain medicine they gave her worked great and she was weaned over to Tylenol w/codeine quickly. Pain was there but manageable.

She was given sugar water by her sippy cup but did not want it but when they gave her her formula by sippy cup she immediately drank it down. She was given a liquid diet that evening and the next morning she ate eggs for breakfast.

After we got home she was fretful, whiny and fussy for about a week. She didn't sleep well at night for about a week either. But I expected that. If I were the one having the surgery I would have been unbearable for several weeks! :)

The second week she made a turn around and soon was back to normal with everything.

Hope that helps. And I was just like you and posted the same questions and worries before Taylor's surgery. I hope all goes great for Eyson!
Jennifer
Nanny to Taylor (uclbcp)
11/1/06
lip repair - 4 months
soft palate repair - 6 months
hard palate repair - 10 months
fistula repair - scheduled March 14th
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Postby jacksmom » Fri Oct 12, 2007 12:17 pm

HI Heather! Jackson had his palate surgery back in April. The surgery took about 4 hours, and we stayed 3 nights in the hospital. We were only supposed to stay 2, but I didn't want to take him home until I was 100% comfortable with his eating and I was sure I could control his pain with oral meds. The last thing I wanted was to end up back in the hospital for dehydration!!! It took about 10 days for him to get back to normal. It was a LONG 10 days! The worst part was not getting any sleep! He would fall asleep for about 30 minutes and then just wake up screaming. I am still not sure if it was the anesthesia, or just the pain. The first week he wouldn't take any formula, just mainly juice and pedialyte. You just have to be really patient, and content with the eating small amounts REALLY frequently for a while. After the first couple of weeks, things were pretty much back to normal, and we haven't had any trouble sine then. Eyson will do great I'm sure! St. Louis Children's is a WONDERFUL hospital. Jackson has been put to sleep there 6 times in the last couple of months and they have always taken great care of him! They give Jackson VERSED every time before taking him back, so that he is pretty much out of it. I think it makes it easier on all of us! When is Eyson's surgery? We will be back in St. Louis on the 31st for Jackson's final surgery. I keep thinking we may run into eachother! We fly in on the 30th. Good luck! Keep me posted!
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Postby jacksmom » Fri Oct 12, 2007 12:36 pm

P.S.....Believe it or not, getting Jackson off of the tylenol with codeine seemed to help with the fussiness. After day 2 we just used regular Motrin and tylenol.
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Postby hatchedk » Sun Oct 14, 2007 5:45 pm

Which team do you see in St. Louis? We just moved here and are starting at Children's Friday. Andy already had his palate surgery 1 year ago. It sucked, but we managed. He didn't eat from his bottle for 2 weeks, thankfully our Dr allowed spoon food.What is the date?Good luck.Karen
Karen...Mom to Katie 9/9/04(NCA) and Andrew 5/16/06 (UCLP)
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Postby jacksmom » Mon Oct 15, 2007 11:25 am

Karen, St. Louis Chilren's is a wonderful place! We travel there from Birmingham for my son to see a specialist for another problem, but I have heard a lot of good things about Dr. Albert Woo on their cleft team. We have met several of his patients, and all seemed to be very pleased. How is Andy's speech going? Jackson had his palate repaired in April, and he is still not really making any sounds beside Mama. He knows a little sign language, but I am really getting concerned. Good luck with your new team! St. Louis is a LONG way from Arizona!
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Postby heather » Tue Oct 23, 2007 4:29 pm

Eyson's surgeon is Dr. Woo. He is so wonderful. He is absolutely great with Eyson and the repair to just his lip was excellent and I am very confident that his palate repair will be the same. I encourage you to get in contact with Dr. Woo. He is an excellent surgeon.
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Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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