Latest update as of Jun 25, 2024

  • 06/25/2024: More Updates from Divina

    Robert can now swallow small amounts of water. This Wednesday, he will have a fluoroscopy procedure done to determine his swallowing abilities. If he can swallow without difficulty, then he can begin to eat food. He will most likely start with a soft foods diet. The PEG tube will probably remain for a while to provide additional nutrition.

    Capping of the trache began today to see how well Robert can breathe through his mouth and nose. He tried three hours today and did well. Tomorrow, the trache will be capped for six hours, eventually building up to twenty-four hours and then, hopefully, removing the trache soon. He is eager to be rid of the trache!

    During physical therapy, Robert walked forty feet using a walker. He also walked backwards while holding on to a set of double bars. He is happy about his progress in walking, but it makes his feet and ankles hurt. Also, sometimes during therapy, he experiences nausea.

    One other challenge is that his jaw has been hurting and swelling from a pre-existing TMJ condition. The Speech-Language Pathologist sometimes has to modify the therapy that she does with him.

    He thoroughly enjoys his music therapy and says that he could do that all day!

    Today he had art therapy for the first time. He was asked to paint something specific and talk about how it relates to his illness and time in the hospital. The therapist said that she has never heard anyone describe their art in the way that he did. It is a running joke in our family that Robert can look at a blank canvas and speak eloquently about it. :o)

    Robert has a new bed with an automatic inflatable mattress, which has been so much better for his back pain.

    He is also using a new wheelchair that he can navigate and wheel around himself.

    Robert wants me to say thank you again for your notes of encouragement. They bring him so much joy and make him feel less alone.


About this fundraiser

On May 12, Mother's Day, Robert woke up not feeling well and immediately after breakfast, he asked his wife, Divina, to bring him to the Emergency Room.

His initial symptom was dizziness, which then progressed to weakness in his legs and double vision later that night.  Within three days, his body was in a rapid decline including symptoms of slurred speech, inability to swallow, difficulty breathing, and more muscle weakness that turned into paralysis.  On the fourth day, he was intubated in the Intensive Care Unit.

Numerous tests - blood work, CT scan, MRI, and a lumbar puncture - gave no answers as to what was causing this cascade of symptoms.

Neurologists tossed around a few ideas and based on the symptoms only (with no test results confirming), they began treatments for Guillain-Barre syndrome..  Robert received Immunoglobulin Therapy followed by Plasma Exchange.

A second lumbar puncture later confirmed Guillain-Barre Syndrome with the variant possibly being the very rare Miller Fisher Syndrome, which affects one to two people per one million people worldwide.

Robert has responded well to the treatment, regaining some movement in his arms, hands, legs, and feet.

Having been intubated for fourteen days and not able to fully breath on his own,  Robert went through surgery to get a tracheostomy for continued mechanical ventilation and a PEG tube to provide a means for nutrition.

He has been transferred to a long-term acute care hospital closer to home where the goal is to wean him off of the ventilator.  He is making strides each day, increasing the number of hours breathing on his own - first 8 hours, then 12 hours, eventually 16 hours, and hopefully breathing fully on his own soon.

He will receive some physical therapy, occupational therapy, and speech therapy at the acute care hospital, but will need more aggressive therapy in these areas after he is discharged.

Some symptoms that remain to be resolved are his swallowing and speaking abilities and being able to open his eyes and not have double vision.  He is also experiencing a lot of nerve pain.

All proceeds from this fundraiser will go towards supporting any out-of-pocket expenses his family will incur and any needs they have while Robert recovers and is not able to work.

Organized by

The Koonce Family

Cleveland Heights, OH, USA

Organizer
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This fundraiser will directly support

Divina Koonce

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Beneficiary