Where to even begin? This chapter of our journey as a family beings in the fall of 2011. As a mom I can remember my teenage daughter looking forward to her sweet 16th birthday just like every other teenager does, getting your license, dreaming of more clothing, cars, dating and boys! Except the fact that she had these flu like symptoms that really just did not want to go away. For almost 2-3 weeks the symptoms just kept lingering and as a mom I tried everything and kept thinking I have to get her well for her sweet 16 birthday party because on 11/11/11 she turns 16!
Sure enough she got to go and enjoy her own birthday party with family and friends, bonfire, movie under the stars, food all the things teenager like, she still did not feel good but she attended the event. Still attending school but as soon as she came home in the afternoons, a nap was in order! She even felt too tired and sick to get her drivers license! She rested over Thanksgiving break and Christmas break was coming soon, but of course as a high school student final exams were in order. This is the day that is vivid in my memory as a parent with a child with an un-diagnosis illness, the last day of school for Christmas break 2011, she attended school took her final exam and spent the night with a friend. The next day, mid-morning she came home and that was it.....Zombie!
As a parent, at first I thought it was just exhaustion from a full semester of AP classes, teenage wipe out tiredness, and just needed more rest, WRONG! Hope started sleeping 12 hours, then the 12 wasn't enough then 16-18 hours per day and wake up exhausted!!! Needless to say I thought she is probably just sleeping too much and needs some exercise to get her going again. I would go in and check on her, to make sure she is alright, but here is one of the keys to this whole journey I am about to tell you. When I would put my hand on her forehead to check for temperature, she would be normal, no big deal, thermometer reading usually in the 98.0-98.9 range, but her hands were cold as ice! Yes it was December, Yes the heat was on, but she was like ice! Not long after the flu like symptoms started to fade and just an average cold with a runny nose still lingered then came an infection, one that raised attention of the attending pediatric doctor at the time, and needed two anti-biotics and an anti-biotic cream to heal, but after two sonograms the doctor assured me that it was no cancerous, but possibly a staph infection.
December 2011 was when all of the doctors visits started with what many doctors have labeled her as their "mystery patient". Right in the middle of Christmas festivities we had many doctor visits to a local pediatrics numerous blood test, and the two sonograms, with a simple comment, "Mrs Nichols your daughters medical blood test are normal!"
Normal that is a word over the past year and half of our lives that I do not like and have come to realize that in the medical field it is thrown around quite often!!!
Normal? Mild fever, runny nose, body aches, fatigue, headaches.....normal? My thoughts as a parent, Doc I don't know what YOU think is NORMAL but this AIN'T NORMAL!
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