Thursday was the big day. Anna's palate repair. I hope I can convey the scope of thoughts and emotions that came with this but I doubt I will be able to fully. Going into it there were so many fears: Fears of loosing her to the anesthesia were heightened because we had no medical history, fears of a difficult repair, fears of the recovery, fears that she would develop a distrust of us... And on the flip side there was this opportunity for a full and complete life she would not have without the repair. We were at CHOP at 7:15 AM and were promptly wisked back to pre-op. She cried (as she always does) when her vitals were taken but stopped quickly. There was an issue with ENT not being scheduled to insert the ear tubes but our nurse got it straightened out and the necessary paperwork completed. She was given a "giggle juice" cocktail (versed for those of you who care :)) and had us laughing SO hard. Our now dopey Anna had not one care or concern. That and the professionalism and empathy of every single person we came in contact with while in pre-op made it so much easier to give her a kiss and say good-bye.
She was out of surgery around 12:30 and very angry. Daddy got her to sleep the way only he can. Another dose of morphine helped too. She had a lot of gurgling (swallowing was now different) and soon after slipping into a deep sleep would stop breathing momentarily (breathing was now different). She plays with hair to comfort herself but couldn't do that well now on account of the elbow restraints which are necessary so she doesn't put her hands in her mouth and rip out stitches.
To close her palate, two lateral incisions were made on either side of the cleft and then the cleft was sutured together. While her palate was moderately wide, her mouth is very small. The combination didn't make it the easiest repair for the surgeon but she said all went very well. Her palate appears to be normal in length which is important for proper speech and avoiding future surgeries. After being in recovery for about an hour, Anna was admitted to the surgical floor. It was a long afternoon and evening. There was a lot of difficulty controlling her pain. She was gurgling and choking and would stop breathing momentarily. It had to feel like she was drowning. Her eyes conveyed so much raw fear and physical pain. I will never forget that look. She couldn't sleep because of all of this but was completely exhausted. I kept telling her how strong she was, that she was going to get through this. She eventually ended up sleeping for about 30 minutes after which her heart rate was lower and she was much more calm. Her brothers and sister came for a visit and brought balloons. She gave a small reaction that she was happy to see both. Matt stayed with her overnight and I brought the other three home.
We were fully expecting to have to stay another night and her surgeon suspected this as well. Anna couldn't leave until she was drinking and eating, and due to the pain she wasn't interested in either. She slept for hour and two hour increments through the night. Not much but enough that she was doing much, much better than just 12 hours prior. Her surgeon sat with us for a bit in the afternoon and watched Anna down a yogurt and get mad that she couldn't hold her bottle herself. Even though Anna had not drank much more than an ounce total, her surgeon thought she would be fine to go home! Shortly after she left though the surgical resident came and checked in and encouraged us to stay another night if we didn't feel comfortable taking her home yet as dehydration is a main reason palate repairs return to the hospital. I said, no, we'll be fine. Should have checked with Matt first though as I was evidently feeling much more confident than him. We ended up choosing to be discharged anyway (by none other than Kara Detweiler!!!). It was a good choice. After we got her through a SERIOUS constipation issue in the comfort of her own home (sorry - need it in here for the record) she slept great through the night and was eating and drinking fine today.
We were astounded at the number of people involved in her surgery and care. Completely. The amount of talent and professionalism present in those hands went above and beyond what we have yet experienced in the realm of medical care. I looked around at options for her repair and am so thankful doors to other places simply did not open.
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