Hello All,
I'm sorry this update took so long. I've had a hard time coming to terms with the fact that Kennedy will indeed need surgery again. The thought just hurts. Let me explain.
October 6th Art and I brought Kennedy back to CHOP for her triple bronc. A triple bronc is a broncoscopy done by 3 sets of doctors: ENT, GI and the Pulmonary doctor. The pulmonologist needed to check her lungs, ENT needed to check her airways and GI needed to check her GI track, esophagus and her reflux. To test her reflux she needed to have a probe in for 24 hours so we had to stay overnight. She was scheduled for 10 am but that didn't happen. It was not a smooth day, a disaster even, but Kennedy was eventually taken into the OR around 2. Everything went smoothly and the doctors came to meet with us. They said that her swelling has gone down significantly, about 90% was gone! There are still two areas that are swollen right under the vocal cords so they want to give them a few months to heal. We'll have another bronc done in January to check the progress. Lungs looked great as well!
The bad news is with her upper airway. They said her airway is so narrow she'd never be able to breathe through it on her own and that he wouldn't try any of the caps (the ones that would allow her to speak). He said she wouldn't last with breathing just through her nose and the airway is basically the size of a newborn babies. So our option is airway reconstruction surgery. In the weeks leading up to the bronc I hoped and prayed that she wouldn't need this surgery. it's a very serious, very scary surgery. the doctors will have to take a piece of her rib, cut open her airway and insert the rib piece to widen the airway. Recovery is hard and she'll be in the hospital for about a week. I can't imagine her being in the hospital that long. I know that sounds crazy since she spent 7 months there but she was an infant. she didn't know any different at that time and she didn't know what was going on. When I look at her now, running around and smiling and laughing, the thought of her being there and being in pain just breaks my heart. She's so vibrant and full of life. She doesn't slow down. It's almost like she's making up for lost time. It's so different from when she had her trach surgery, she's so different, and I wish to God she didn't have to go through this.
But with every situation, you have to look at the good and the bad. That's the bad, the ugly. The good is that after a few months of healing they'll be able to take her trach out! This is not the road that Arthur and I were expecting. Then again, nothing during this journey turned out to be what we were expecting. But it's what has to be done to get our girl healthy!!
Right now we're looking at late March, early April for the surgery. It's good because it's still a few months away, bad because all I do is think. In the meantime we will do what we always do, enjoy every minute of every day and continue to make amazing memories together as a family like we did this summer!
I remember this time last year, Kennedy had just come home from the hospital and we weren't able to take her pumpkin picking or trick or treating. I remember thinking "it'll be different next year" and it certainly was! Just imagine what she'll overcome in another year. The skies the limit with Kennedy!
Love to all,
The Crist Family
