Our life was like most others until 2 years ago when Chad was diagnosed with liver disease. Many tests and two specialists in, Chad didn't have a clear diagnosis. Fear and uncertainty set in about his future. We decided to head out to MUSC. This was Dec. 2013. More lab work and an MRI were performed and we waited patiently for his second visit with the specialist. This visit would NEVER happen.
In January 2014 Chad developed a severe case of bronchitis. What we thought had been a nightmare the last year, was nothing in comparassion to what was about to hit us.
January 30, 2014 is a day that will remain in our memories forever. Chad started having excruciating pain in his arms and thighs, then tingling in his hands and feet. After a few days he started falling saying he could not feel his legs. That night Chad started having trouble breathing and we decided to take him to the ER. I had no idea that this would be the last time Chad would be in our home for a long time.
After many tests he was diagnosed with Gillian-Barre Syndrome. This is a horrible auto immune disease that causes the myelin sheath of the nerves to be destroyed causing paralysis from toe to head. There are several degrees of this illness, but Chad got the full blown case! After only a few days Chad was unable to move his feet, legs, hands, arms and head. As if this wasn't enough Chad began having problems swallowing, and talking. He was unable to stand or walk. I was slowly watching my husband become totally paralyzed. I was so scared and so was he.
Communication became more and more difficult as time went by. He was unable to use the call bottons and had no way to ask for help. He slowly started to have respiratory problems. After the hospital finally consulted Chad's pulmonologist he immediately put Chad into the ICU. In the ICU they started Chad on IVIG treatments and steriods to help the GBS. These treatments cost $10,000 a bag and Chad would need 10 bags. Chad seemed to be stable with his breathing, so they thought they could move from ICU to a step down ICU. This move would turn out to be a disaster.
While there Chad's care was also a stepdown. Nurse call bottons were still being placed where a paralyzed person could not reach. Even the one he could blow in was never placed close enough. His food trays were left across the room and if I wasn't there he wouldn't get fed. His breathing scores began to come down daily and his bipap machine never fit his face. Somehow the head doctor decided to send him to a floor that even had less nurses per patient. After a terrible Valentines weekend of no eating and bearly being able to breath, the neurologist, (who I will say saved his life) sent Chad back to the main ICU. We were then told Chad had to go on a ventilator. I was so scared. They rushed Chad to the ICU and did and emergency bedside ventilator. They also placed a tube down Chad's nose to his stomach not knowing he had varices (which are enlarged veins) that could kill him if they were hit. I just knew Chad would bleed to death if they had hit one of these.
The doctors not knowing much about GBS weaned Chad in just a few days from the vent. GBS patients will not regain strength to breath until the nerves regenerate. This can take a very long time. So without considering a tracheostomy they weaned him and within days had to do another emergency bedside vent.
Throughout his hospital stay no doctor had a plan for GBS. Only one nurse took the time to read and learn about it. The others said they didn't have to learn. We were told over and over that there was not enough staff to provide effecient care. During Chad's time on the vent he developed pneumonia. This caused another round of endless antibiotics. For a month Chad was put into a narcotic-coma like state. With his liver issues the drugs took longer to metabolize causing him to be out of it for days. This meant no physical, speech or occupational therapy. Which has left Chad with severe muscle wasting.
Chad is 6' 1" and normally weighs 194. Now he is down to 145 pounds. During the weeks in ICU Chad's nutrition became less and less. They just seemed to forget that he had not eaten. A feeding tube should have been placed once his swollowing ceased, but instead he was given TPN. Which the doctors like to call an intravenous liquid toxic poison nutrition. (Now that makes you feel really comfortable! NOT) Finally, a month later he was scheduled for a trach and peg feeding tube. If they had had a GBS plan from the start he would have not had to endure such hardships from lack of education regarding GBS.
Needless to say he was slipping further and further behind. Starving and begging for water. For weeks Chad drifted in and out of consciousness. The GBS started a domino effect as his digestive system, liver and kidneys began to fail. He was placed on dialysis. Chad became so swollen that he looked like he would explode. The fluid that was collecting in his abdomen became infected leading to more antibiotics. After 5 paracentisis procedures to drain the abdomen fluid, and rounds of antibiotics it would take 2 months before we would see any improvement.
While he was in the hospital for 3 months physical, speech and occupational therapy were sporatic. At one point a PT told me they were going to decrease therapy because Chad was uncooperative. Little did they know that GBS is like an exposed nerve. And everytime they touched him it was excrutiating pain.
We had several meetings with head staff, hospital personnel, and doctors; pleading for better care and communication and to no avail. The doctors were labeling Chad as "Poor Prognosis" and never discussed that with me. He was in the hospital 3 months and we nearly lost him 3 times. After the end of the 3 months they informed us that Chad needed to go into a long term acute care facility. We were given only a few days to place him. There were none suitable in our town causing us to have to go out of town. We were able to place him 2 hours from our home. This would be extemely hard on our family being 115 miles away. I had already reduced my work schedule to two days a week and this was going to affect it even more. I would have to leave our 15 year old daughter and stay in a strange town alone.
They sent Chad by ambulance to the new facility only for him to crash even more. His blood sugar plumited to 24 and he then went back into respiratory distress needing to go back on the ventilator for the 3rd time. His hemoglobin and platelets dropped so low he was having spontaneous bleeds everywhere. I was told for the 4th time he would probably not survive. It would be 3 weeks before Chad would adjust to the new place and his doctors could go through his records.
The day after I was told my husband would not survive; I walked into his room and Chad said, "hello!" I heard my husband's voice for the first time in 4 months!!! After a good 5 days they discovered he was bleeding from his abdomen. They sent him to MUSC. One step forward, two steps back. This seemed to be the pattern of our lives.
Now we are 4 months and one week into this horrible nightmare. I am trying to go home two days a week to work and check on our daughter, and then go back and pick up my caregiving role for the rest of the week. Our goal is to regain strength and get back home where Chad will be placed into a rehab center to relearn how to walk. We are close to the end of his salary benefits and will have to take on our own insurance and start the process of disability. Hopefully one day Chad will be able to return to his job but that is far off in the future. He has many challenges ahead of him. He has had over 10 specialists, a long hospital stay, numereous surgeries and has such a long road to go.
Chad now has limited movement in both his arms and legs. He can write and is able to use some social media. He is starting to feel alive again! Praise God. He still can't stand or walk, and swollowing is slowly improving.
We would like to thank each and everyone of you in advance for your kind donation and help in this battle. This has been a catastrophic event that no one was or can be prepared for! We give thanks to God for His grace and mercy and for giving our family the strength to endure such a horrible disease. We look forward to the day when our family will be whole again. We now have a new appreciation for the term "rare disease" and can't wait to be an advocate for Gillian-Barre patients in the future!
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