Despite our efforts to avoid it, Kaitlyn had her esophagus stretched on August 30, 2012. I was extremely apprehensive about it. The risks were frightening, but the thought of Kaitlyn being unable to eat like a normal child were more upsetting. Dr. Sutton reassured us that he didn't want to do it either, but he felt her continued problem with the gagging was probably more anatomical than behavioral. Dr. Sutton leans on the side of caution, so I had a strong feeling that Kaitlyn would be in good hands.
The night of August 29, we prepared to leave early and were asked to arrive at the Utah Valley Surgical Center no later than 6:45 a.m. I made sure to give Kaitlyn her last drink of milk, and put tight elastics in her hair so we could just wake up and go without fussing over it.
The morning of August 30 was somber. During some point in the night, I grew quite upset at our previous pediatrician for being a big reason we were going in to have her esophagus dilated. I hated the thought of poor Kaitlyn going through something that could have been avoided by running a simple x-ray. Once we were ready, I woke up Kaitlyn and let her know it might be a hard day, but it's just one day and then we will be home, just as the therapist suggested.
We arrived at the hospital and I was surprised they put us in a large room with curtain dividers with other children slowly coming in for their procedures. We got Kaitlyn dressed in her gown and Shayne and I showed her all the many things we had bought her to help make her day easier. I kept thinking that if you can't spoil your child for going in for surgery, then I don't know when you can. She loved her new toys.
Kaitlyn is so sweet natured. She smiled at the nurses, and was completely compliant during her wait. It wasn't until a nurse laid her down and made her drink some dark pink stuff that she started to get nervous. I rocked Kaitlyn a lot that morning. It seemed calm her down, and I knew I had to be strong for her.
Dr. Sutton came in just when they wheeled her back. It wasn't until this moment that he told me of some of the risks of a minor perforation. I knew the risks were bad, but I had no idea that even a minor perforation would put her on a feeding tube for three weeks to a month. I started to pray harder that Kaitlyn would be alright.
Not long after sending her back, Kaitlyn came back to Shayne and I barely awake and wanting her Mommy and blankie. I held her and rocked her close, and she fell asleep for at least another hour. Everything went well. I felt like I could now relax too.
Dr. Sutton let us know that her diverticulum (pocket) may still be a problem. Just to get the scope in the right place, the doctor had to go "up and around the corner" to get to the stomach. This may create problems in the future for swallowing. Dr. Sutton recommended a ear, nose, and throat specialist to repair the pocket and make a straight line to her stomach. She may also need her esophagus dilated every year, as the symptoms return.
The idea of another surgery, especially one that will involve a feeding tube for three weeks to a month during healing, just didn't seem like an option. I left the hospital that day with a conviction that miracles happen! Kaitlyn won't need her throat operated on, much more than more dilation.
Kaitlyn bounced back amazing. She seemed sore the first day, but she continued to bounce around and be her usual self. We gave her a special blessing Sunday, September 2nd, asking if it is His will that she will make a full recovery and not need the surgery. It wasn't until a week later that I really recognized the progress she was making. There was NO gagging. NO choking. September 8, she ate an entire piece of ham pizza without a problem. If she can eat a pizza - I think she can eat many other things. It's every hopeful right now.
So where do we go from here? For now, we are continuing the food therapy once a month. We are doing monthly weight checks, and have follow up's scheduled for two months from August 30 when she had her dilation. Dr. Sutton and her therapist strongly feel that Kaitlyn needs a modified barium swallow study. However, with a barium shortage right now, Kaitlyn will not be having this anytime too soon - and that's ok because we both need a break.
As for the "other pediatrician" - we have left his office. We are back with Dr. Knorr in Lehi. Even though this is an extra drive for us, we feel that we will be in the best hands under his care. The two meet again September 24th to discuss her special needs.
I continue to be hopeful for Kaitlyn. I have been praying harder than ever for her. She is always on my mind, and I hope that one day she can eat like a normal child. I admire her strength for being only two years old. Kaitlyn does hard things because she has to. She doesn't fight it, she accepts her challenges, and she hasn't let it make her unhappy or nervous. She is still so innocent and trusting. Kaitlyn doesn't dwell on the bad things. She is a good example for many, and I am so proud to be her mommy.
“Promise me you'll always remember:
You're braver than you believe, and stronger than you seem, and smarter
than you think. Christopher Robin to Pooh”
