Corey’s test was not successful YET. The test showed that she aspirated as she swallowed. The initial swallow was fine, but the subsequent swallows “went down the wrong pipe” as my mother would say. Corey does not know how to cough and doesn’t appear to have a gag reflex. These factors along with her developing the muscles necessary to swallow are needed to prevent aspiration; taking food/liquids into the lungs instead of the stomach. The risk is that aspiration can lead to pneumonia…not part of the recovery plan!
There were a number of additional factors that may have contributed to her result. She took the test at 11 a.m.; by the time we got started it was closer to 12. She was up at 2am and 6am today so by noon she was seriously fatigued. The barium also made her nauseous and wouldn’t you know it, the x-ray machine kept shutting down. Collectively there were some issues! We will continue to introduce very small, controlled quantities to help develop Corey’s throat and tongue muscles. We will try again in a month or so.
We had a new nurse orienting with us today. She asked me if I was disappointed with the results of the test. I admitted I was. Swallowing and eating would be an amazing next step, but she’ll get there. We discussed Corey’s progress the last 14 months, 6 months and last 3 weeks. To the “new” person her achievements are astounding. As we discussed Corey’s overall progress all I could think of was what I see every day.
I am in awe of Corey’s acceptance and humility. I watch her as she is bathed, changed, dressed and assisted to stand. How would I feel knowing others had to care for my every physical need? I watch her listen to conversations around her. How would I feel unable to express myself? I shared with our nurse that sometimes Corey takes her pillow and covers her face while we’re in the room. The nurse laughed but think about it; if we don’t want to continue a conversation or even be apart of a conversation, we can walk away from it. How does Corey leave?
Just because she doesn’t eat, drink, speak, walk or talk does not mean that she is no longer an intelligent 19 year old young woman that still wants a normal life! Despite her current limitations she expresses her joy, humor and strength in every smile. Her determination, motivation and tenacity expressed in every action. Every day I ask her what she’d like to do next, she writes; “Live”. I tease her that as long as she keeps breathing, she’s already doing that. (She laughs)
Today was difficult for another reason. There are days no matter how old you get, sometimes you just need your mother. My mother passed away 6 years ago today and tomorrow would have been her 86th birthday. I thought of her as we were having the swallow study. Mom died of esophageal cancer. Towards the end she had difficulty swallowing and she had a feeding tube. I thought it ironic that today was Corey’s test. When I watch Corey I’m reminded of the same grace, humility, strength and acceptance I saw in my mother when she was walking her path. In my limited experience I wonder; are these common characteristics for the people that are forced to play the cards they were dealt? I remember asking my mother if she was scared. She told me, “God didn’t ask me; ‘Dede what day do you want to be born’? And He’s not going to ask me; ‘Dede what day do you want to die’? So, we can sit here and cry that I’m going to die or we can sit and continue to gossip and have fun”. “What should we do”?
Am I disappointed that we’re not jumping onto the next step…yes. Do we want full recovery…yes. Do we know when that will happen…no. So what do we do?
We focus on being together and appreciating the little things that make today fun. As Corey says, “LIVE” and “LOVE LIFE” xoxo