February 16th update (by Nancy)

Picture a mountain range that you’ve been told levels out to a beautiful plain where you can rest and rescue the missing parts of your life.

But you can’t see all the mountains or the valleys between so you don’t know how long the journey is.  That is GBS.

So as we near a year into our journey, I thought it might be good to recap what we do know.

·         Steve has one of the most severe cases the neurologists we consult with have known.  This is often tied to the rapidity of onset (his was two days).  Most people recover from even the most severe cases, says the literature, though some are left with deficits.  Recovery can take up to 2-3 years to arrive at where it likely will remain.

·         God has reknit Steve’s nerves steadily through this time, that work is from the inside out……things like nerves that makes eyes open and work together, tongue, mouth and throat work together to swallow, diaphragm and other muscles to remember how to breathe, shoulders to shrug, head to turn, thigh to remember how to move and so on.  Imagine!  

·         Because this is an autoimmune disease, the body itself is the instigator and enemy to the body.  There is no outside invader that can be fought with outside measures, like cancer, for instance.  So, as we have been told, the task of the medical teams that have helped Steve and the amazing LTAC team still working is to keep his heart beating, support his lungs in returning to functioning fully, and to keep invaders like pneumonia at bay as much as possible.  In fact, he just experienced another “small” pneumonia and they were on it in a flash, sending the antibiotics before it was even fully confirmed.  

·         Within this journey, setbacks are expected, like pneumonias and infections.  The recent hematoma (bruise inside his thigh) is one that thankfully is rare and now Steve has a “screen” in him to protect against blood clots to the heart and lungs and won’t be taking blood thinner any more.  And then there are the strong medications that are regularly tweaked to help him function at his best, seesawing between being asleep or in discomfort….finding that middle zone.  

So at any given time, depending where we are on the current mountain, my response to “How’s Steve doing?” often vague or contradictory from the answer I gave just a day ago.  Thank you for understanding and standing with us in what can’t be understood.

Recent hopeful developments:  Steve can flex his forearm muscles, he asked for his train magazines, specific music he heard on the radio and Hogan’s Heros DVDs that we have.  He can now have ice cream as his swallowing is a tad better.  He is back to the Trach collar for a few hours a day, and his hematoma is abating fast. 

Thanks for following along,

Nancy and Steve