You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: Brian's Palate Repair (Pierre Robin)
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This story is shared by Brian's mom, Robyn.
We're home!! Brian was discharged late yesterday afternoon and we arrived home and spent the rest of the evening unpacking and settling back in. Shaun was very happy to see his Mommy and little brother and mommy was very very happy to be back home, both to see her other baby and to have this experience behind us. Can I just say... PHEW! [wiping sweat from the brow :-))]
As most of you know thanks to BC, (who I absolutely adore, but more about that later) the PS fixed his whole palate instead of just the soft. When he got in there he saw that Brian had made good progress growing and decided to go ahead. YAY!!!!! The PS says we only have an outpatient procedure left to undo his lip-tongue adhesion and if all goes well with this repair, we are done with surgery! YAY!
Thursday after they brought Brian back to his room, where we could FINALLY see him after the surgery he was in lots of pain and was crying inconsolably. They were fairly stingy with the narcotics due to some concerns with the smaller airway of PRS and his heart problems. He did have Tylenol with codeine ordered but the nurse wouldn't give it until he could get at least 1 oz of Pedialyte down and keep it down for 1/2 hour so that he wouldn't get sick to his stomach. But Brian was in too much pain to eat. So it was this vicious cycle until the MAMA BEAR in me came out and said "GIVE this child SOMETHING to make him more comfortable, so that he CAN eat." So she called the Dr. and he ordered a small amount of narcotic with lots of monitoring and Brian finally got some relief, sleep and then he ate and then he got the codeine and then he got real relief and ate 4 oz. and slept 4 hours.!! GEESH! If they would have listened to me sooner we could have avoided all that!
Anyway Brian is doing very well now, and for the most part we have only done the POT (plain old Tylenol) thing today and he looks good! He does however, have tons of drainage from his nose, leftover from the cold of last week maybe????
Let me just tell you all what a wonderful thing it was to have BC there with me both Thurs. night and Fri. lunch. She was so fun to get to know and so supportive! She's a wonderful lady and it was just like we had known each other forever. I LOVED that she brought me the digests to read so that I could keep up with my cyber pals and wouldn't have so much to catch up on! THANK YOU BC!!! We Love you!!!
To all of you who gave us so much support with your kind words, thoughts and prayers, and cyber hugs, I give my unlimited thanks. You saw us through a scary time and we came out the other side stronger and ready to heal! I felt your support and prayers and love throughout the time we were at the hospital.
Robyn and Brian
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