You'll find hundreds of files on cleft lip, cleft palate here on

This one is about: Ryan's Palate Surgery (Pierre Robin)

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Hi Everyone,

This is coming from one very tired, but ecstatic mom. First Thanks for all the (Cleft-Talk) posts with well wishes and prayers I read many of them the night before surgery since I couldn't sleep. Well we went to the hospital Tuesday AM to play the assess-and-see game. Shortly after we got there the head of pediatric anesthesiology came in and started reviewing Ryan's chart. The pre-op nurse and two anesthesiologists discussed this for a long time. After this discussion and assessment they decided to go with our ENT's & PS's decision to operate. Then the waiting for surgery game started. Since there was such a discussion over whether to do the surgery or not the first hour went quickly. Then the PS resident came to go over any questions with us and to get Ryan's history. Then ENT came and talked to us for a bit. Then the plastic surgeon came then it was time to take him back. We walked to the operation room door with him. Then we handed him over - This was the hardest thing I have ever done.

We decided to go eat a bit of breakfast. I watched my stomach couldn't take any food yet. We then made a stop at one of Ryan's other doctors then back to the waiting room. 15 minutes after that the PS came to talk to us. It was over in 1-1/2 hours. The surgery went great - no complications and he was in recovery. This however was a long wait it took over an hour for Ryan to open his eyes. They then told us to wait by the elevator and we could go to PICU with him. Then came the shock. There was blood coming from his mouth and nose (I expected this) but there was blood coming from his trach!!!

This shocked us. Makes perfectly common sense but I never even thought about blood coming from the trach. Once we were in the PICU I got to hold my sweet boy again. OH WHAT A FEELING. Ryan of course was not a happy camper.

They ordered him morphine and kept him pretty sedated most of Tuesday. During the night they began wean him off the morphine. Well Ryan slept but mom did not. His heart rate and respiration rate were quite high and his O2 sats were a bit low so the monitors kept going off. He also had a slight fever. However the morning brought a bit happier Ryan - no smiles yet but at least he would open his eyes with out getting hysterical. They kept weaning him off the morphine. His red blood cell count was low but he was no longer oozing blood so they did another blood draw at about noon. The counts had gone up a bit. The PS resident came by around two and said Ryan was progressing wonderfully. He said he thought we would be able to go home but he would have to speak with the PS. So the floor doctors got the ball rolling with our nursing agency. We get increased hours for a few days. And at 4:30 he came back and said we could leave tonite. So here we are home. I couldn't be happier. Not that our hospital stay was bad quite the contrary everyone knows Ryan and I so they take good care of us and we had many well wishers stop in to say Hi and check on Ryan. He has so many Doctors nurses and other staff there that know Ryan well. But there is no place like home.

I guess this is one of the few times it is nice to have home nursing and a g-tube. We didn't have to wait for Ryan to take food either.

Well I know this is long winded but I wanted to share with all of you. The prayers definitely made a difference.

Bye for Now
Margie M

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