When waiting for a diagnosis or test results, nothing can cushion the blow or prepare you for bad news. Especially when it comes to your children. Most of Jaylyn's life, from the night she was born up to today at her CP clinic appointment, that wound in my heart that was just about healed...got ripped open all over again.
That moment where you feel that your mourning for the child you thought you were going to have is over, and then realizing just how far from it you are.
Not that doctors purposely lack sensitivity or bedside manner, but the manner in which each blow of a diagnosis was delivered, certainly was lacking in those departments! I was never asked to sit down to discuss any of these things with anyone. Im certainly not complaining about the care or the physician's that treat Jaylyn, quite the contrary. If I ever have questions, all I need to do is ask and the docs are great at getting back to me. But why am I left with so many questions? Why wasn't I sat down and given the full rundown?
Why are there so many pieces of the puzzle that I myself have to put together? One answer to that is continuity of care! With so many doctors even in the general pediatric group that sees my typical children, many many mistakes have been made.
With the multitude of specialists at 2 seperate children's hospitals, information doesn't always get passed along to the appropriate persons. Most often, the parents. As was the case today. Jaylyn's neurologist had diagnosed her with right hemiplegic cerebral palsy several months ago because that was the side that has shown the most concern due to her stroke. I noticed some issues with her left side as well, such as her inability to pick up small objects using the pinscher grasp. I chalked it up to being delayed. Or maybe I didnt want to believe it. Maybe I let my guard down and wanted to be hopeful. And because I was hopeful, had faith, and had the highest hopes that she would only have to worry about one side of her body being affected, that wound in my heart was ripped open yet again.
It wasn't so much the news itself but the delivery. The assumption by the orthopedic specialist that I had already known. Yes Im a nurse. Yes my area of expertise is special needs children. But at home, I AM MOM! I get scared, I panic, I worry, I question and doubt myself and call the pediatrician at the slightest sign of anything being wrong. But...with being a nurse, I also have high expectations of the peers and fellow medical professionals that provide my daughter's care. The care she received today in and of itself was superb! However, hearing a change in your child's diagnosis shouldn't be via the physician's dictation over the phone. He had used a few archaic medical terms that I myself had to re familiarize myself with. Once I had gotten home to do that, I was upset. I did what any mother would do and began to Google. My main points of reference aren't mommy blogs or message boards. I use the same sites as pediatricians do, so I dont get misinformation overload. After reviewing the word tetraplegic (aka quadriplegic cerebral palsy ), I looked at Jaylyn and then the definition of the diagnosis. I looked again at Jaylyn and yet again at the diagnosis.
She did it again! Jaylyn has surpassed the expectations. She has beaten the odds! And even though I already blasted this little secret all over Facebook today, the orthopedic specialist did say that (even though he isn't supposed to ) Jaylyn is so determined that he thinks she will walk! Not like a typical child of course but she will walk nonetheless. So today was a bitter sweet day.
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