The Fever that Changed the Journey Part One: Dark Day

I will never forget what it felt like to walk in darkness so dark my mind could not grasp up or down, right or left, forwards or backwards. With hands outstretched I felt for every limb, every leaf, trying to navigate through brush and around trees without smacking into or tripping over them.  I was terrified.  I knew that if I got turned around I would get lost, or much worse: I would come across an animal that was only too happy to have me for a late night snack.  I hadn’t lived in East Africa very long, and those National Geographic documentaries I had seen as a youngster played in my mind.  Most kids in the boarding school had lived overseas for most of their lives and didn’t think twice about wandering around in the endless blackness of an African night. But I was 14 when we moved to the DRC: I was an unseasoned MK.

As insidious as sunburn on a cloudy day the process of ‘seasoning’ takes place whether you welcome it or not.

In many ways I feel like I am being seasoned by the many challenges of Noonan Syndrome, wandering, tripping and grasping for branches along the darkness of my journey.  So many days are full of joy and celebrations of milestones, and every day family life.  But there have been several, dark days where I have faced terrible fear that seeks to dismantle the ever-changing ‘normal’ we as a family so desperately strive to attain.

May 29th, 2013 was one of those dark days…

Fevers

Rhyse had been having fevers every day for seven days.  Though a nasty, odd lung virus had been weaving its way through the family, none of us had experienced fevers for more than a day or two.  Further, Rhyse had only had his new appendage (gtube) for four weeks. It was certainly possible he had an infection in the stoma. On day seven I called Rhyse’s pediatrician, Dr. S, and managed to talk my way into an appointment that day: not an easy task with the newly installed nurse line where I am no longer “Rhyse’s mom”.  Instead I am a complete stranger, treated like a paranoid mom who doesn’t know how to handle a fever. With teeth clenched I calmly educated the nurse on Noonan Syndrome and how it affects Rhyse, and that, “no, Tylenol is NOT going to be the cure all. And no, Rhyse can’t wait three more days.”

A few hours later, with a screaming one year old in my arms, I walked into Dr. S’s office.  She took one look at him and she knew too, something was amiss. And even if it was a virus, not an infection, it was overtaking him and he needed medical supervision, as usual.  Another trip to the ER.  This trip to the ER would be no different than all the others, I thought.

As I left the doctor’s office I called my husband, Jon, and let him know he was going to have to leave work early to be home when our two girls get off the bus at 4pm. Dr. S had requested he stay overnight for observation-- no matter what.

 Being very hopeful that our hospitalization days were now off the radar for at least the summer I no longer had my “just-in-case bag” packed.  Because of this I had to stop at home for maybe five minutes to throw some overnight clothes in a plastic bag.  I didn’t even entertain the thought of more than a one night’s stay.












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