When last I wrote about Joe, he was in the midst of "jaw distraction" procedures in an attempt to open his airway and get him off the ventilator. Several days later, we're finding out that it probably wasn't his jaw at all that blocked his breathing. Doctors plan to do a tracheostomy very soon. While we understand the necessity of getting him off the vent and breathing like a regular kiddo, the trach procedure has many risks. The risk of infection is 100 percent, which makes it a certainty, rather than a risk. Joe may need the trach to stay in place for two years, which means he will run that risk of infection for a long time. Heart babies are at greater risk of complications; infection can wiggle its way into his vital organs and further compromise his health.
I detect a great deal of frustration and negativity in posts from mommy and daddy on Joe's web site. In fact, they readily admit to being exceedingly tired of the setbacks and the grueling day-to-day routine of life with a baby in the PICU. Joe recently celebrated his one-month birthday. Unfortunately, it wasn't in his own house, in the arms of his loving family. But he's still fighting. They call him Mighty Joe. They don't call him that for nothing.
We all continue to follow his story, day to day, moment to moment. And we look forward to a time when we can tell Joe, "We remember when..." and have these days of pain and uncertainty be nothing more than a fading memory, replaced by new moments filled with laughter and energy and regular boyhood fun.
I had a song running through my head the past couple of days, prompted by my efforts to say something to Kerry that might be comforting. Words seem so silly and inadequate. But there's a song that the chorus sang at the summer camp where I was a counselor during college that always touched me. No matter how many times I hear it, the words, the sentiment, and the beautiful melody make me teary and fill me with some unexplainable serenity. Have a look and listen.
I detect a great deal of frustration and negativity in posts from mommy and daddy on Joe's web site. In fact, they readily admit to being exceedingly tired of the setbacks and the grueling day-to-day routine of life with a baby in the PICU. Joe recently celebrated his one-month birthday. Unfortunately, it wasn't in his own house, in the arms of his loving family. But he's still fighting. They call him Mighty Joe. They don't call him that for nothing.
We all continue to follow his story, day to day, moment to moment. And we look forward to a time when we can tell Joe, "We remember when..." and have these days of pain and uncertainty be nothing more than a fading memory, replaced by new moments filled with laughter and energy and regular boyhood fun.
I had a song running through my head the past couple of days, prompted by my efforts to say something to Kerry that might be comforting. Words seem so silly and inadequate. But there's a song that the chorus sang at the summer camp where I was a counselor during college that always touched me. No matter how many times I hear it, the words, the sentiment, and the beautiful melody make me teary and fill me with some unexplainable serenity. Have a look and listen.
Comments