You have reached out in numerous ways to find out about what Fernando and our family have been experiencing...it has been a heart wrenching experience and an emotional rollercoaster, but finally we are ready to share Fernando's journey with GBS.
Fernando was diagnosed with GBS, Guillain-Barre Syndrome, in early December. His medical team have told us that Fernando has one of the most severe cases documented, therefore his recovery will be slow and his prognosis unknown.
It was heartbreaking to watch Fernando's rapid paralysis of his arms, legs then his lungs, which required him to be intubated and put on a ventilator. After a short time, he did receive a tracheostomy and was put on life support. In the first few weeks of January, Fernando lost all movement, he was too weak to open his eyes, causing his eyes to close. He was able to quiver his right upper lip to communicate, but lost that as well. For 18 days, he was unable to move, communicate or breathe on his own. Fernando experienced a lot of anxiety with the knowledge that we would be unable to communicate and worried about his safety, care and being alone. Two rounds of IVIG we given, there was no response. After a necessary waiting period, one round of Plasma exchange was given. After the 4th dose, Fernando's chin began to move and he opened one eye!
The children and I were so excited to see that his eye had opened, I began asking him a series of questions which he would respond by blinking once for yes and twice for no...a unique word was arrived at by going through the alphabet, a blink for each letter to spell out the word. Then Fernando's other eye began opening, unfortunately after a few weeks he began to regress, his recently opened eye closed and his opened eye began to blink inconsistently and was becoming weaker. Doctors decided that a second round of Plasma Exchange would be given. Throughout February and March, Fernando's condition continues to improve, he is able to nod his head for yes and shake his head for no. He blinks when the alphabet is recited to spell out a word. Although he is unable to move his arms and legs he does have sensation in his fingers and toes. At this point, the doctors are unable to provide a definitive prognosis and recovery will continue to be slow and take months, perhaps a year or more.
Fernando's mind and cognition have never been affected which makes his will to communicate very powerful as well as his limited ability to communicate very frustrating.
This devasting syndrome has affected every facet of our lives. The physical and emotional struggles faced by Fernando are immense and supporting him in his recovery has been an ongoing challenge. It has been extremely difficult to balance his needs with the those of our young children. It is a very stressful situation and I often find myself torn between wanting to be at the hospital with Fernando and leaving in time to be there for the children, as my daily commute takes between 1-2 hours, depending on time of day and traffic. All the while, I'm worried about how Fernando's doing in the hospital, alone and helpless.
It is also extremely important to me to create some normalcy for our 8 year old son and 5 year old daughter. Ensuring I can be there for them to keep their daily routine of school, activities and as well as helping them cope with the worries they experience dealing with their dad's serious illness.
We are thankful that he has made some gains, but the road that lies ahead will be a long one, with an unknown outcome.
The children have been amazing with processing the information about their father's condition. They look forward to our weekend visits with dad and are eager to see his progress. They miss him bitterly and say "things aren't the same without Dad, when will he be home?" They ask in terms of birthdays, "Will Dad be home in time for his birthday in September", " I don't know, no one knows for sure", I reply.
Friends and Family have been asking how they can help. Thank-you so much for your care and concern. No words can describe the gratitude we feel for the kind words, gestures and treats for the children.
How can you help?
We have arranged for a communication assessment for Fernando and could use some help with raising the necessary funds for Fernando's communication devices required to facilitate communicating his needs during his recovery.
We could also use some help to purchase necessities to assist Fernando at present and for his future rehabilitation.
Thank-you for taking the time to read about our journey and for your on-going support during this very difficult time.
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