1st Attempt

Sunday, May 17, 2009
We are still here! Spending so much time in a hospital is so exhausting. Kennedy is hanging in there. Today was our first attempt at weaning Kennedy from her high frequency vent to the conventional vent. The reason everyone contemplated weaning Kennedy was because she was doing exceptionally well the last day. We were weaning down on her settings, her x-rays were improving, and her gases were satisfactory. We tried this afternoon, however, Kennedy was not ready. She did really well for the first 30 minutes and her first blood gas looked great (best so far). Everybody in the room was in good spirits and was really cheering Kennedy on.

I almost hate moments like these - it is so hard to stay level headed and not to get too excited. You don't want to let your hopes come up to high just to watch them come crashing down. I want with all my heart and soul for Kennedy to succeed, for her to get off these machines and to go home with us. In addition, a higher level of stress and anxiety comes upon me. For the two hours she was on the conventional vent I watched her monitor and Kennedy's mannerisms like a hawk - I was on high alert. I didn't want her to fail!!!

Kennedy was having a heck of a time. We thought she was ready to move on from the high frequency, but Kennedy let us know otherwise. In good ole' Kennedy fashion, she let us know that this was not on her time and/or her terms. After about two hours we had just about maxed out the setting on the conventional vent and were forced to switch back over to high frequency. We wanted to make sure we didn't get stuck in a predicament like last week where she was crashing and once we put her back on high frequency she continued to struggle.

Kennedy is doing great now that she is back on the high frequency vent. Her edema is starting to subside and she is looking more and more like my peanut. Furthermore, her skin is holding up really well. She only has one blister (bed sore) on her belly.

I tell my daughter everyday how proud I am of her. She is the strongest person I know. She has and continues to endure more pain then most people do in their entire life. She is my hero. Kennedy has the uncanny ability to fight and a will for life that I don't think most of us possess. She is my pride and joy. I don't know what I would do if I lost her. Most of the time I forget that she has a chronic syndrome/disease. In my eyes she is perfect. I love her for everything she is! I pray day in and day out that she will pull through this. I long to hold her in my arms. It has been ten days since I last held Kennedy. I will continue to be in Kennedy's corner cheering her on. I will not give up on her.

OUR GOAL: TAKE KENNEDY HOME WITHOUT A VENT. To me this is a must in order to maintain a good quality of life for her.