The Hospitals

Hospital #1

By the second day, Hutch continued to decline.  The doctors wanted to run more tests on him but he refused.  He was scared, disoriented, and already losing the ability to speak.  Clearly, I knew he needed those tests.  I begged the doctors to let me consent for him.  After all, I was his wife and he was barely able to communicate.  They could not let me make that decision for him - unless he became completely incapable of making his own medical decision. 

 

That night Christopher and I went home - we were totally drained, numb and exhausted.  It was May 1st, Christopher's birthday was the next day.  We never expected the call that came in.  At 11:30 pm, the hospital told us that Hutch just coded - his heart had stopped. They asked for my permission to revive him and move ahead with the tests. I said yes....My son and I sat on his bed, hugging each other and crying.  The weight of that moment was unbearable.  

The next day, we drove straight to the hospital.  The doctors were still running tests.  Thankfully, my family was there, our support system.  They stepped in and took Christopher out to lunch - no big celebration but something to ease his mind on his birthday that afternoon.

Later that day, one of the head doctor's called us into a private room - the diagnosis was Guillain-Barre Syndrome (GBS).   They explained that it was an extremely rare condition where the bodies immune system attacks it own nerves.  It could happen to anyone, at any age.  There is no cure, but in most cases, people begin to recover after days or weeks.  There was still hope.  That small opening was everything!

Within the next couple of days, he began losing total ability to move.  First slowly, then rapidly until soon he couldn't speak and then he couldn't breathe on his own.  HE BECAME TOTALLY PARALYZED!!!!  

After the diagnosis, one of the doctor's sat down with me and explained our next step.  We needed to transfer Hutch to Overlook Hospital in Summit, NJ.  They had a specialized Neurological ICU, one of the few places equipped to treat something as serious as GBS.  Everything was happening so fast. 

Could you imagine going from being a healthy, active, independent person to relying on machines just to survive?  A ventilator to breathe, a feeding tube for nourishment, a catheter - no control of your body at all!! It was just unimaginable!  

Hutch would spend the next 8 1/2 months in four different hospitals. 

I was working full time at a pharmaceutical company and at the time, I had the most amazing, caring, sympathetic boss.  But how could I explain to my boss what we were going through.  But Pam, my manager, was a gift during the darkest time in my life.  She didn't hesitate.  "Do whatever you have to do", she said.  "Don't worry about work, we got it covered. Just focus on your husband and family".  That kind of grace and empathy meant the world to me.  Her support meant I didn't have to split my focus.  I could be where I needed to be and that was at Hutch's side.

                                        

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Hospital #2

We arrived at the Neuro ICU at Overlook Hospital in Summit, NJ.  I nearly fainted at the sight of Hutch lying there.  It was overwhelming -tubes were coming out of him from every direction.  Machines beeping constantly, the room was filled with the sharp scent of antiseptic.  Before we went in, we had to put on full protective gear.  One piece suits, head covers and masks.  It felt like stepping into another world.  

                                       

 

The doctor's approached me quickly and explained that before they could begin treatment, more tests were needed.  I nodded numbly trying to hold myself together while everything inside was unraveling.  

They could begin a treatment called Plasmapheresis.  The doctor explained that this procedure filters the blood to remove the harmful antibodies attacking the nervous system.  They would remove the plasma that carried the antibodies attacking his nerves, filtering it, and then returning it back to his body.   It wouldn't cure him but it could help to slow the progress, ease complications and give him a better chance at recovery. 

They went ahead and started the treatment.  They said I could stay if I wanted to.  I stepped out for a few minutes while they got him set up.  When I returned, Hutch was set up to even a bigger machine.  More tubes ran in and out of his body.  

This was the most unreal thing I had ever seen.  I stood there watching him, surrounded by tubes and wires.  I kept repeating in my mind - he's going to get better, he has to get better.  

He remained in the Neuro ICU for about 2 weeks.  The treatment was intense and the recovery was uncertain but he made it through those first crucial days.  Eventually, we were told that it was time to move him to a rehab center.  The recommendation was Kessler Institute in West Orange, NJ, one of the top rehab hospitals in the country.  I felt like a small step forward in the transition - from crisis to recovery, even if the road was long ahead.

By this time, Pam, my incredible boss, reached out again.  She asked gently if I might be able to work part time now that Hutch was moving closer to my office.  She told me to come in for a few hours a day if I felt up to it and then I could work from home in the evenings.  Her grace, once again, was a lifeline in the middle of so much chaos.  Having that small piece of stability support without pressure meant everything.

                                     

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Hospital #3

Hutch arrived at Kessler Institute in West Orange, NJ and was set up in a private room.  The atmosphere felt a little calmer and a little more personal.  This was a placement for healing and not just surviving.  One of the first people we met was his respiratory therapist, Karim.  He was kind, warm and direct.  He took the time to explain what kind of therapy Hutch would be receiving and what milestones we could expect over the coming weeks.  He had a way of making the overwhelming seem a little less scary and that meant everything.  

Then we met Mary, Hutch's nurse.  She was a bright light in the middle of everything.  Hutch immediately connected with her.  You could see it.  He seemed calmer when she was in the room.  There was a gentleness in her presence.  Mary suggested that Christopher and I bring in some personal touches, perhaps pictures, notes, anything that might lift his spirits.  There was a bulletin board mounted right in front of his bed and we began filling it with memories and Love. 

                                 

 

Hutch still couldn't speak, because he was intubated and remained paralyzed. Mary gave us a white board and taught us a letter system.  We recited the alphabet, letter by letter, and Hutch would try to blink when we landed on the right one.  It was very frustrating, slow and emotionally draining, but it gave him a voice.  Eventually, we got better at it.  We spelled out a word, letter by letter, painstakingly, and he blinked to tell us when we had gotten it right.  It was a small miracle every time we understood what he needed.  

Then, one day, I came into his room and the intubation tube was gone.  He looked at me and tried to smile.  I could barely breathe!  I just burst into tears.  They had replaced the tube with a trach, and although it was still hard for him to speak, this was the first step towards getting his voice back.  

The next day, he started speech therapy.  His therapist was patient, determined and kind.  She started with the basics, helping him to shape his mouth to say the letter "A".  She gently guided him through the alphabet.  It hurt his throat to try it at first but overtime his voice grew stronger and it hurt less.  After a few weeks he could say almost all of the letters! Every new sound was a celebration.  

His physical therapist was a power house.  She didn't let him off easy even when the pain was unbearable.  Twice a day she worked with him, pushing, stretching, and encouraging him.  Hutch wasn't a fan to put it lightly.  You could see it on his face.   

The weekends there were rough.  The hospital was short on staff and the halls were quiet. The goodbye's always lingered too long.  They were hard on all of us.  There was one small escape we were allowed to do for him, we took him outside.  He loved the sun on his face, sitting in the fresh air.  I could tell he just felt a little more peaceful and more like himself.  Then came another blow....

I walked into his room one day and I was told that insurance would cover only a few more days at Kessler.  I needed to find another facility and fast.  How was I supposed to do that?  Where would he go? I was terrified and that's when Donna stepped in.  She is more than a very dear friend, she's my "big sister" and I love her to death.   Donna, who was also a nurse, offered to help me find the right place.  Her supporting us that moment was a gift I'll never forget.   We visited a few places together.  The first was a dark and depressing one with people lying on beds and wheelchairs in the hallways. I walked out of there sick to my stomach.  The second place was completely different, bright and warm.  The staff was very kind and best of all, it was much closer to home.

                                        

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Hospital #4

Hutch next hospital stop was St. Clair's in Dover, NJ.  The facility was different than the others.  It was a step down from Kessler, but still offered therapy and respiratory care.  He was placed in a unit where nearly every patient was on a ventilator.  The atmosphere was heavy, quiet and honestly a bit heartbreaking.  It wasn't the most uplifting place to heal.  I'll be honest, this was where the cracks in the system started to show.  Insurance dictated where he went and when.  If it had been up to me, I would have sent him to St. Clair's before he went to Kessler.  I felt he should have been weaned off the ventilator first and then moved to a full rehab.  But it wasn't up to me. 

While he was in Kessler, they tried to wean him off the ventilator but it didn't work.  He could breathe on his own for just a short time but it was too much, too soon. It hadn't gone well and he needed to be put back on again.  They chose to put him back on the ventilator and assured us that we could try again in a few weeks.  I guess that's why he went to Kessler first and St. Clair's last.

St. Clair's provided both physical and occupational therapy and Hutch gave everything he had.  Slowly, his body began responding.  His arms and hands gained strength, though he still could not bend his fingers to grip.  His legs were showing signs of some movement as he was gaining a little more muscle but still unable to move much.  

Most of the Aids there were wonderful, gentle, attentive and caring.  They said he was funny and even though he was in a hospital bed unable to move much or speak for any length of time, he still made people laugh.  That's one thing that amazed me about Hutch.  Through all the pain and unbearable torture he's gone through, he still held on to his sense of humor.  He had his moments, who wouldn't but overall he chose to stay positive!

They decided to make a second attempt and start weaning him off the ventilator again.  This time they started gradually - an hour off, then back on, then two hours off, then back on.  Little by little, day by day, his lungs started to do the work on their own.   There was progress and then one morning, I walked into his room and there he was - sitting up in his bed with no ventilator!! I froze, my eyes immediately filled with tears.  The doctor walked in and said that during the night something happened.  When they had tried to reattach the ventilator tube, Hutch's body rejected it.  He said it felt like he couldn't breathe with it on anymore! 

His body decided it was done. That was the last time he ever had to breathe with assistance!! Thank God!

                                    

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This is part of our ongoing journey with GBS. Check back for more of our story as it unfolds.