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

Wish Dad could be part of a research study...

Saw this on a GBS Facebook support page. Not completely sure of the validity but it is nice to know that new meds are being researched to fight this syndrome. 

New Breakthrough Treatment for Guillain-Barre Syndrome in Clinical Trials

The first new treatment for Guillain-Barre Syndrome in 20 years is entering a Phase II clinical trial. It’s called eculizumab, which is a humanized monoclonal antibody first approved by the Food and Drug Administration in 2007 to treat a rare blood disorder.

In Guillain-Barre Syndrome, or GBS, the body’s immune system attacks part of the peripheral nervous system and often causes acute neuromuscular weakness. People with GBS may also experience numbness, tingling and blurred vision. Because this disease can affect respiratory muscles, some patients have be placed on a ventilator. Up to 30 percent of patients are left with a permanent disability, including some who cannot walk unassisted.

Two treatments, plasmapheresis and intravenous immunoglobulin, are currently used on patients with GBS, but medical experts continue to look for even better options, including eculizumab.

Neurologists believe controlling inflammation during the acute phase of GBS is key to reducing nerve injury and long-term neurological problems. Eculizumab may help do that by inhibiting activation of the body’s complement system. This component of the immune system may become overactive in GBS and damage nerve fibers.
The Phase II clinical trial is being conducted by researchers at the University of Glasgow in Scotland and is expected to be complete by March of 2016.

The exact cause of GBS is not known, but it usually occurs after a respiratory or gastrointestinal infection. In some cases, the syndrome can be triggered by an immunization, including the influenza vaccine.

February update from Nancy

Steve has made steady progress recovering from the leg hematoma of two weeks ago, according to the CT scan and blood tests.  He is still in pretty much pain from it.  We have kept Dr Krause busy fine tuning the medicine mix so he isn't sleeping all the time or in constant discomfort.

She, along with nurse Erin, got his bed moved across the room for a better view and more sunshine.   An extra kindness much appreciated.  Thanks to visiting friends Sue and Dave, Connie, Terry and Rick, who made a special delivery of Luigi ice treats, provided by Jeryl and Sally from our church "life group"

This has been a challenging two weeks after this setback for Steve striving to get back to the progress he was making.   Trusting we'll soon get back to the good conversations we were having and the DVDs we enjoy watching.  

As always, thank you for following along with us and for your prayers.
Nancy and Steve