Kyle's Cleft Palate Repair Story

Children and adults with cleft lip and/or palate issues

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Kyle's Cleft Palate Repair Story

Postby samjune79 » Wed Aug 01, 2007 7:39 pm

Kyle is home! Here's his story: Kyle went to bed Sunday night at 8:30 pm with a full bottle in his belly. I really thought he would wake up before midnight but he didn't so I let him sleep. We got up and got ready to leave the house on Monday morning at 5:00 am and I had to wake Kyle up. At 5:30 we were at the hospital signing in and that's when Kyle started to cry non-stop for almost an hour because he was hungry. My poor baby. Even know all the other babies and children were hungry too, I felt bad that only my baby was crying. We tried to keep him entertained with the DVD player and as you can see in the attached picture, he like it. They let him keep it on as they wheeled him into the holding room before surgery. When it was time for surgery he was not fussy and went with the nurse with no problems. Surgery took 3 hours and went great. Bad news is that he had to have so many stitches they will not let him use the bottle. We have to feed him with a soft tub attached to a syringe until his follow up appointment on August 15th. As soon as Kyle saw me he started to cry for me. I got to hold him right away. He was on an IV drip of morphine and for 10 hours it was not working like it should, so they switched his medicine to another type of IV drug called Fineline (I think-not sure how to spell) along with a Tylenol suppository. This worked right away and he was able to sleep finally at 11 pm. The next morning Kyle's pain was more manageable and he wanted to try and eat. I fed him some water just to get all the dry yucky stuff out of his mouth, then we tried the formula. He just didn't want anything to do with it. It was past noon and he hadn't eaten anything and we were told that he would have to stay another night. Yuck! Good thing Kyle wised up and started to eat like a pro. I think it was again another medicine switch was needed because after they stopped the IV medicines and put him on Oral Tylenol with Codeine he really started to eat. He ate 3 ounces at 9:30 pm and was told that was enough for him to go home as long as we could fill his RX at a 24 hour pharmacy. So, we were discharged and ran straight to our CVS where at 11:30 pm we filled his RX. We went home and put Kyle in his activity center and he started to play while I got all of our stuff unpacked and got his feedings ready for the night. We feed Kyle and gave him his next dose of medicine and he was off to sleep at 1:00 am Wednesday and so did Will and I. Right now I am co-sleeping with Kyle in our guest room and Will is on the couch close to the guest room. It takes 2 of us to feed Kyle so we have family and friends coming over round the clock to help us out these first few days home from the hospital. I think after a few days of eating with the tub, Kyle and I will be pros and I will not need that much help. I have included pictures.

Here he is before surgery watching a movie
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Right after surgery
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Getting some sleep
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At home playing
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samjune79
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Postby jacksmom » Wed Aug 01, 2007 11:17 pm

Left you a message on myspace too...but thought I would give one more whoo-hoo...glad that's over with! It's all uphill....(or is it downhill?)...whichever one is the good one.....from here! :roll: Glad to hear that Kyle is on the mend!
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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Postby samjune79 » Thu Aug 02, 2007 2:15 pm

Well, it seems like he can get his no-no's off really good and he rubs his eyes then his nose then puts his fingers in his mouth. Last night (we are co-sleeping) he sleeps on his tummy with the no-no's and is not to happy that he can't roll over when he is not tired so in the middle of the night he got the no-no's off and rolled over. I only heard him getting fussy, if he kept quiet, I don't think I would have woken up. I got the smaller no-no's out from his 1st surgery and they seem to stay on a bit better. This is really going to be hard, but I hope once this is over it will break him from his thumb sucking/chewing.
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Postby tigerlilly149 » Thu Aug 02, 2007 2:27 pm

I think he looks great! Thanks for sharing your story!
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Ethan Alexander
April 23, 2007
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