Well, we knew the day was coming, but we weren't sure when they would schedule Rylee for her first bronchoscopy. This Friday, 11am, the date is set. Our goal, keeping Rylee healthy enough that she can have the procedure, but more importantly that she will recover with no breathing issues afterwards, causing her to have to be admitted. The pulmonologist went over the procedure with us in the office today and while it all sounds fairly simple and quick, I feel terrible that my little girl has to go through this.
I'm still riddled with guilt, even two months post diagnosis. I know there wasn't anything I did to directly cause Rylee to have PCD and that is not where most of my guilt comes from. Seems like these days my guilt is more from things like sending her to school when I know she is not at 100%, feeling that I'm just not doing enough for PCD research or not taking her to the doctor soon enough to avoid more severe infection. I feel guilty for being a working mom, when I feel like the only place I should be is at home, taking care of my little girl. The more I try to be Supermom, the more I realize I'm not. I'm not sure that the guilt will ever subside permanently, but I'm hopeful that someday things will get eaiser for Rylee. Sometimes when I feel guilty or sad about the whole situation, I remind myself that it isn't me who fights daily for breaths, it is Rylee. And really, if she isn't complaining, who am I too? So I continue on, doing the only things I know to do--therapies and treatments for her.
So on Friday, we'll take Rylee to CMC-Levine for her bronchoscopy. The whole procedure should last about an hour. They'll go in and suck out all the mucus they can find. What they suck out will be caught in a trap and sent off for culture--checking to see if it is bacterial, viral, fungal or antibiotic resistant. The positive side is that while she has the scope, there will be a camera to take pictures--pictures that can be used later for comparisons. They will also be able to tell if the atelectasis has caused any permanent damage thus far.
My next goal, once we get Rylee on a healthy track--date night with my husband. We have spent countless hours the past two months taking care of Rylee, doing all we can to get her better and keep her that way, that we haven't had a date night or quality adult time in what seems like forever. At this point, I feel like it's too much work to have someone watch Rylee for extended periods of time, so I hardly ask. Maybe I can even sneak a night away to watch my husband perform with his new band!
My two nieces have entered a contest on the Disney Channel, the Friends for Change grant. It is a grant for organizations or individuals to help make lasting, positive changes in the world. Their goal is to bring awareness for all those suffering PCD, especially their little cousin. I can't express in words how I felt when they called to tell us, each with their own projects, to help make any bit of a difference they can. Rylee doesn't understand the impact that this could have for the PCD community, but Jeff and I do. So, Haley and Natalie, thank you! The three of us will be here to help you in whatever way we can. But no matter what the outcome, Uncle Jeff and I are so proud of you for trying to do such a great thing for your little cousin and we will always be thankful!
But for now, we take it one day at a time. I am so happy to say that when necessary, this family pulls together for one special little girl!
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