There is something that comes around every few days, weeks, or months in our family. Sometimes it floats in like the wind, quietly. Other times, it rattles it’s chains and keeps the whole house on edge. This invisible phantom that creeps into our lives and so often scares us to death is known in our home as the “Pain Ghost”.
Like a ghost, Elise’s pain is invisible and scary. How can we help her if we don’t know where it hurts? We can’t see the pain. We can’t locate the pain. Elise can’t communicate the pain to us. It’s presence is just there, hovering. There have been times that her ears began to bleed before we were aware of an infection. She doesn’t have the ability to reach up and pull on them like small children will do, alerting their parents to the problem. Frequent urinary tract infections sneak up on us and are only discovered after testing at the pediatrician’s office. We also know that she has to experience cramps and muscle spasms throughout her body as a result of her cerebral palsy.
We exhaust the list of possible culprits by taking her blood, swabbing her throat, taking x-rays, and putting in a catheter to test her urine. Finding the source can be days or even weeks after the pain first appeared. Poor baby has to suffer as we try to unravel the mystery of what’s wrong. It can feel like we are all haunted by her pain that we can’t find fast enough.
Elise doesn’t just struggle with communicating her discomfort to us, it is downright impossible for her to let us know what is hurting, itching, burning, or aching. She can’t just walk into the room and announce, “My ear hurts!”, “It’s painful when I pee!”, or “My hip joint is killing me!” Elise’s impairments leave her without any way of signaling where she hurts or how much pain she is in. Over the years, we have become very attuned to her different communication cues and what they mean. There are still times, though, that her wails of pain and constant hitting and biting of herself don’t give us any information about the specific location of her suffering.
What we do know, though, is when this “Pain Ghost” has begun it’s haunting in our house. Her crying, whimpering, screaming and increased self-injurious behavior tell a story of unknown sickness that we have to uncover. It always starts as a mystery. A question of, “Is this just bad behavior (which she is already medicated for), or is it something bigger and more serious?” Times like these have resulted in scores of panicked visits to the pediatrician, gastroenterologist, neurologist, ENT, and orthopedic surgeon. So many times, it is just a matter of which test they run first as to how quickly we discover the source of her discomfort.
So, a couple of weeks ago, as you may know from the previous post, Elise was admitted to the hospital for treatment of Mastoiditis. We ended up going back to the surgery center last Friday for the doctor to put her under and clean out the infection once and for all (strong antibiotics were not working). I was so happy for him to do it, though, because it would mean a final end to Elise’s pain associated with this problem. Or so I thought. After being told that the infection was clear now and her pain should subside, I virtually glided out to the car with the knowledge that Elise would be comfortable now and the “Pain Ghost” had been scared away.
Well, beginning with the car ride home and not subsiding as of now, Elise is obviously still plagued by pain somewhere on her body. All I can do at this point is pick up the phone and play Dial-A-Doctor! This week we will see her orthopedic surgeon to check on her hips. Elise has hip subluxation (dislocation of the hips) at different degrees in each hip. This is due to her spasticity from cerebral palsy. We have always laughed about the way you can pick Elise up and she can appear as stiff as a 2X4 with her knees locked and her body straight and stiff. This is what we call “One Piece Elise”. Catchy, huh? She started this in infancy, and has continued over the years (although it is better now after having leg surgery a few years ago). It’s no joke, though. This repeated stiffness of her legs over time has caused her hips to come in and out of joint and, in turn, lead to some pain.
Let’s hope that this doctor’s visit proves worthwhile, and that we leave with an idea of where her discomfort is originating. Or at least be able to check that area off of the list of possibilities. Then on to the next specialist. It’s all a game. And I hate that for her. It just isn’t right. There are no good answers --- believe me, we have searched for them! But, it’s what we’re faced with, so we will do our best for her. That is all we can do.
Know this, though... I will keep shooing off that pesky “Pain Ghost”, even when it scares me!
(The ghost pictured at the top of this post is my son a few Halloweens ago. Talk about an easy costume!)
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