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This one is about: Erin's Soft Palate Repair

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Hi everyone,

Erin had her first (and hopefully only) surgery to repair a midline cleft to her soft palate (she also had a small notch in her hard palate that PS says should correct itself). She was almost 10 1/2 months when she had her surgery in November. We prepared by reading everything in the Cleft Links about surgery. We were also really careful about exposing her to other people (read kids) for about 2 weeks before her surgery - just so she wouldn't catch anything. Fate being what it is, I caught a horrible "flu" three days before her surgery. Luckily, Erin didn't catch it from me. But, by the time her surgery rolled around it had settled in my vocal cords so I was communicating with all the nurses and Erin's doctors with smallest, raspiest voice ever.

Erin's surgery was on a Thursday at 8am. They told us to be at the hospital (an hour's drive from our home) by 6am. Erin was not to have anything to eat or drink after midnight. We decided that we would just just go about our usual routine (dinner between 5 & 6 and bed by 8) and not wake her up to fed her before midnight. Our plan was to get up around 4:00, get ourselves ready and at the very last minute take Erin from her crib and pop her into her carseat and hope she went back to sleep for the ride to the hospital.

Erin had other ideas: At about 3 we heard her stirring in her crib and by 3:45 she was definitely awake. We got her up and played with her. She wasn't upset or hungry (hurray!) She did sleep some in the car. We checked in at admitting and then went up to the surgery waiting room where they told us they wouldn't be able to take her into the pre-op area until after 7 (well, why did you tell us to get here at 6 then?)

Personally, I think someone forgot that they had an infant coming in and they had to go round up a crib.  So for about 45 minutes we played with Erin and walked the halls with her - she was starting to get hungry and a little cranky. Once they took us into the pre-op area and changed Erin into a gown, we met 2 or 3 nurses and the anesthesiologist (the sweetest man on the face of the earth). Our PS came in right before 8 and then they took Erin into surgery. The Nurse anestheticist carried Erin into the OR. No tears from Erin or mommy.

We spent the first hour or so in the cafeteria having breakfast and then returned to the surgery waiting room. The operation took about two hours total. Our PS came out and told us that everything had gone great and that once they got Erin settled in the recovery room they would come get us. She took the arm restraints that we got from Medikids into the recovery so that they could put them on Erin while she was still out.

Sure enough a few minutes later a nurse came & got us. Erin was in one of those little "jail" cribs (they lowered the side once we came in). She was still out - had an IV in her forearm (under the restraint), a monitor taped to her big toe and moistened oxygen blowing near her face. She woke up a little bit later and screamed like I have never heard her scream. The RNs quickly gave her a shot of morphine in her IV and she drifted off again. The RNs brought over a reclining chair and gave Erin to me to hold. She woke up two more times - each a little less severe of a reaction. At about 1 pm they took us up to her room - Just pushed the reclining chair with Erin & me in it through the halls and into the elevator. Best of all they left the chair for us to use. (In fact, we didn't use the crib that was in the room except to change Erin's diaper on).

The nurses were very good about giving Erin her IV morphine every two hours and we were very aware of the morphine wearing off. Somewhere around 5 or 5:30 she got a dose of morphine and it didn't really settle her down like the others had. She had a gigantic crying jag and was so upset that when she tried to stop crying, those half-hiccups-that-you-get-when-you've-been-crying-a-lot would hurt her incision/stitches and make her cry more. So we finally spoke with the nurse to say that the morphine wasn't calming her down. The RN rechecked the doctor's orders and found that it said that Erin could have UP TO .9 (mg? grains?) of morphine and they had only been giving her .5. As soon as they upped the dosage she was much better. But if you had asked us on Thursday night when we thought we were going home, we would have said Sunday, maybe!!

Our night nurse was and angel. Every two hours on the dot there she was with Erin's .9 of morphine. Erin slept the whole night in my arms in the big reclining chair. It was an interesting set-up, with all the IV tubing, electronic monitor wiring and the tube of oxygen wrapped around my neck/shoulders so that it would blow in her face. The extra morphine really helped and she was able to sleep fairly well.

By 9:00 the next morning she was a completely different baby. She downed 2 ounces of apple juice (which she doesn't really even like) from her MJ bottle. Because here cleft was just in her soft palate the PS said she could still use the bottle. After that she had entire container of applesauce and a little bit of jello. The RN took out the IV tubing (but left the heparin lock in) and the monitor came off and we did away with the oxygen. I was absolutely thrilled with the nursing care we got the whole time we were in the hospital.

We asked that she be switch to a different pain killer (also she no longer had the IV for administering the morphine) so they gave her Tylenol w/codeine elixir - hated it. The RN said that it had some alcohol in it and probably stung her stitches. It also made her dopey. We expected the PS to drop by around 10 am and couldn't wait to be discharged. Unfortunately, she was held up so we spent the better part of three hours riding Erin around the pediatrics/maternity floor in a wagon. Poor thing, she looked so pathetic all doped up with her little arms sticking straight out in her restraints.

We were discharged with Tylenol w/codeine which gave her only once (right before bed the first night we were home - think we wanted to insure that she would sleep through the night). Otherwise we gave her plain Tylenol; and by three days post-op she didn't even need Tylenol.

She was on soft food & arm restraints until our post-op visit with the PS about three weeks after her surgery. Couldn't wait to get rid of the arm restraints, they made it so much harder for her to fall asleep. The PS says the repair looks great - no fistulas!  We will see her again in 6 months.

Erin is doing great and we are introducing table foods. She isn't really interested in her bottle and sucks very slowly (seems more like she chews on the nipple). She's a little terror - been walking since she was 11 months old.

I can't say that your baby's experience will be just like Erin's. In some ways, it was much better than we expected and in some ways much worse. I can't begin to tell you how horrible her crying was that first afternoon - like no other crying that she'd done before; and how helpless we felt to make it all better - truly an awful feeling. But, she recovered much faster than we expected and I sure that a month later she probably has very little, if no, memory of the whole experience. Good luck with your surgery.

Editor's note * Many children do not receive morphine post-operatively as Erin did. The type and amount of pain reliever varies greatly according to the discretion of the doctor. Some children experience breathing problems and/or problems with lots of vomiting when given narcotic medications such as Morphine or Codeine. Many children receive nothing stronger than plain Tylenol and seem to do just fine as well.

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