Avery's Palate Surgery July 9th

Children and adults with cleft lip and/or palate issues

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Avery's Palate Surgery July 9th

Postby Samm » Mon Jun 09, 2008 6:27 am

Avery's palate surgery is coming near and we would like to know what to expect. His lip repair was hard, a tough few weeks, He had issues breathing that kept us at childrens for nearly 2 weeks.

So whats in store with the palate?

Avery has a mic key, hes doing great. we are not crawling yet and he will be 10 months tmo the 10th. hes 20lbs, gotta be near 25 inches. hes a big boy. so i'm not so much worried about losing a few lbs, being fed by tube eleviates that issue.

we dont use a paci, but he sucks his thumb, sometimes his whole hand. we are working on about 8 teeth so far, but his top teeth are growing into his palate area, instead of downward.

So any help in this new journey would be appreciated.
Avery BCLP
8/10/2007
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Postby Babyk » Thu Jul 03, 2008 1:11 pm

Wow it is almost here. lol Less than a week away.

I am not as nervous as I thought I would be. I think Avery is going to do fine. Doc's only concern seems to be if his palate opens back up, as apparently about 10% of them do to some extent, and having to go back and do repairs.

Wish us luck!

Kelle
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Postby mia's mom » Mon Jul 07, 2008 6:56 pm

hey there- good luck. The first day at the hospital is bad. Mia was crying alot and then would fall asleep for 5 or 10 minutes, then cry again. Eventually she would sleep an hour at a time, more as the night went on. What helped was that we brought my husband's laptop and played her favorite movie- toy story 2 when she was awake. It seemed to calm her. She only received tylenol at the hospital and it was less of a dose than she could have taken so she wasn't lasting for 4 hours. Near the end of 3 1/2 she would be crying and clearly uncomfortable. Finally the nightime nurse upped her tylenol and also started alternating tylenol and motrin- that really helped her out quite a bit. The next day, she played with her toys for about 5 minutes. She couldn't stand to be in the hospital but she definitely looked a little better. Once she got home, its amazing how much better she did. At the hospital she didn't eat. On the second day she had an ounce of water and that was all that they really wanted to see her get down. Once she got home she ate cold yogurt- I raised the temp in the fridge so it was nice and cool. She ate tons of yogurt. I think it helped her mouth. the second day back from the hospital she was grouchy and uncomfortable- more so than the second day of the surgery/first day back home. But the third day was much better. We had to give her tylenol for about 5 days (tuesday surgery, gave her tylenol till sunday). after that she was fine. We had to hold her at night for a week or even a week and 1/2 because she couldn't turn herself over with the arm braces and she'd get upset. She didn't even care about the arm braces. She would let me put them on no problem. She would take them off herself which was stressful but she really didn't get bothered by them. You know, what I was imagining was 1000x worse than what it actually was. I hope that is your experience as well. Good luck. Sandy
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Postby Babyk » Tue Jul 08, 2008 9:38 am

Thanks for the encouraging words! I am getting a little antsy now that is is actually here.

Avery does pretty well on the tylenol/motrin routine too so I will try and make sure they start that as soon as possible to keep him as comfortable as we can.

Thanks for the tip about the laptop.....I never even thought about that. He loves the Cars movie and Nemo.......and his Rainforest crib soother. We certainly intend to take that with us too!

I will make sure Sam pops in to let everyone know how it goes.....I'll have my hand full. When he is ill he definitely wants his Mama!
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Postby max's mom » Tue Jul 08, 2008 11:00 am

If they let you, definitely ask for Morphine that first day. They are pretty uncomfortable and need to sleep. Our surgeon made sure the nurses gave Max Morphine whenever I requested it. Also they sent him home on a Tylenol/Codeine prescription which got him through those first few days. Trust me, all that helped make the experience much more comfortable for him and us!

P.S. Max was a thumb sucker too, after the surgery he wanted his thumb but he knew it hurt and eventually he just gave up and no longer sucks his thumb anymore. Good luck and it will be over before you know it.
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Update on Avery?

Postby michellebeau » Tue Jul 15, 2008 3:26 pm

Hi Samm & Kelle,

Just was thinking of Avery and hoping everything went well with the surgery...I'm sure you have your hands full right now. I'll keep your family in my thoughts.

Michelle
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Postby Babyk » Wed Jul 16, 2008 12:59 pm

Hey everyone.

Just getting back to work after Avery's surgery. We had some breathing issues after surgery and stayed in the ICU for a few days. He was discharged from the hospital on Sunday. The surgery itself went very well and Doc is pleased.

Avery is one mad little boy because he cannot have his thumbs. He also has not really slept for more than 30 minutes or so at a time since we got him home. Anybody else have this experience? I keep thinking maybe he is just still trying to come off the steroids but I know if we don't get some sleep soon we are all going to be crazy! lol

Thanks for all the good thoughts and well wishes! I am just glad this is behind us now!
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congratulations

Postby Heide » Fri Jul 18, 2008 10:14 am

thank you for your update on Avery, I have been checking your original message to see if you would update. glad to hear the surgery went well. the limited sleeping was what we experienced as well, our little one slept in her swing a lot those first few weeks. I can only imagine that the "no nos" are irritating; once we did not have those at night - it was much better. take care and you get some rest too. Heide
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Postby Babyk » Mon Jul 21, 2008 8:52 am

Thank goodness we are sleeping through the night again. He also took three naps yesterday which is unheard of! lol

We are alternating the no-no's with mittens and it seems to be working pretty well. He can get both off pretty easily but if you keep him occupied it is not a real problem. The worst is getting to sleep without those thumbs!
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Postby Samm » Sun Aug 03, 2008 11:52 am

Avery is doing great, he will be 1 next sunday the 10th, go its been a year already.

He is doing great. thank you for your thoughts and prayers.

http://www.samuelavery.com
Avery BCLP
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Postby Babyk » Fri Aug 08, 2008 12:40 pm

Well we saw the Doc yesterday and he said everything looks great. The palate looks strong but he wants us to wait a few more weeks before we try feeding.

We will go to the craniofacial clinic here for speech therapy, dental consult and feeding clinic all at once.
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