Apr 18, 2010

"Rainy Day!"

Up till 2:00 AM on Friday night. Up till midnight on Saturday. Praying to sleep in this morning to at least 7:00 AM! Just not in the stars. Babe wakes up sometime in the wee hours. This is a frequent occurrence. Most children with severe brain damage generally have difficulty with sleep patterns, behavior and cognitive function. She's crying so I bring her downstairs with me. She goes through her excited hand waving litany of " woof woof woof la la la da da da uh oh uh oh uh uh" and a new one I've never heard before, "SEVEN! SEVEN! SEVEN! " She has difficulty closing her lips so there is no "mama" or "mine!" in her vocabulary. The brain damage from the birth trauma is the primary factor, of course but I have a few theories of my own after raising a number of traumatized and complex kids like the baby. It wasn't bad enough that the baby experienced the terror of suffocation at birth. She went on to sprout prize winning adenoids that occluded her airway on a good day and became impossible during a cold or virus lowering her 02 sats to the 80's. When they were removed the surgeon came in to tell me she did well, was on her way to PACU and the adenoids were outrageous. Fifteen minutes later a man in green scrubs walks in with a look on his face. I remember a feeling of horror. I remember saying, "You're not about to tell me something I don't want to hear are you??" He apologizes profusely and goes on to explain he is the anesthesiologist and he had trouble after the adenoidectomy. Baby would not breath. He worked on her and bagged her for 15 minutes giving her narcotic antagonists and eventually caffeine. She was "this close" to being intubated, put on a vent, and shipped to SICU when suddenly, she started breathing. Since then she's had hearing tests under general anesthesia and one MRI. I am careful to report the adenoid incident to each new anesthesiologist just as I am careful to mention the boy's potential to have a pseudo malignant hyperthermia reaction to anesthesia simply because he has Osteogenesis Imperfecta. As always some kind-hearted souls believe every word you say and react accordingly. Others get that smug look that all frequent flying parents of medically complex children have grown to adore. I have learned over the years how to deal with the smug ones as have highly organized plaintiff attorneys in the field of medical malpractice litigation. One such smug anesthesiologist came back to me later after our "talk." She had pulled up the computerized adenoid incident and having reviewed it told me it was worse than she "anticipated" so she was changing her plans regarding the days general anesthesia and by the way don't ever go to the Big City for an outpatient MRI with this child as they do not have the set up to deal with the anesthesia emergency she may throw at them as they do in the children's hospital we frequent. I've come to the conclusion over the past 2 years that if I was the baby I would keep my mouth open all the time, too for fear of not being able to breath. As do all of these spunky kids, the baby just works around the mouth closing issue and has developed a non-traditional baby vocabulary such as, "salt", and "seven, seven, seven." She uses sign language for the rest which we've worked on since infancy. So this morning, while still groggy, i hear a noise other than woof woof woof la la uh oh seven seven seven. "What's that noise I say out loud? "It's raining" the boy answers. I jump a mile as I had no idea he was laying next to me on the other side. "Rainy Day!" shouts the baby. A new one! So, today, the kids are making art while I walk around the garden with an umbrella thrilled that the horse poo is soaking in to the garden. It's a great, great, "rainy day" indeed.

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