Joey C

Survivor

Our journey began on August 1st 2015, a day I’ll never forget. Joey, then 14 years old, woke in the middle of the night in severe pain and barely able to breathe. This was extremely out of the norm as before this night, Joey was a typical active heathy teen. He was a camp counselor in the summers, played on 2 soccer teams, did well in high school, hung out with friends, and even volunteered in the evenings to teach toddlers how to play soccer. But when a crippling pain hit and woke him we knew something was very wrong.

Needless to say my husband and I panicked and put him in the car and drove to the nearest ER. He was in the ER for just a couple of hours before doctors decided he needed to be up in the pediatric ICU. Preliminary tests showed he had a type of viral pneumonia – but he would be fine in a few days, the ER doctors all said. They were very wrong. (Sepsis and Pneumonia, Sepsis and Children)

In the Pediatric Intensive Care Unit, the team hooked him up to countless wires, two IVs, and oxygen to help him breathe, but, he still wasn’t getting any better and the PICU team was getting concerned. When the PICU team is concerned – it’s time to worry. As the hours ticked by Joey seemed to get worse, he needed more support breathing with the bi-pap machine and more medication to get his fever and pain under control.

More tests were done, more blood, more scans, and more studies. As the results came back the PICU team realized that this was a much different case than initially thought. This was no simple case of viral pneumonia – Joey had tested positive for MSSA sepsis and was deteriorating rapidly.
By the end of the 1st week in the hospital Joey was on a multitude of antibiotics to try and get the infection under control. Nothing was working, it was terrifying. In the coming days we would come to realize that the rare staph infection that was surging through his blood stream was destroying his organs. Our boy was septic and getting worse by the minute. The strain of staph was so aggressive that his many many doctors sent samples to the CDC for further analysis (the CDC has commented that this strain of staph has not been reported in this country as of yet, Joey is the first to contract this strain).

As the bacteria attacked his body we received daily and sometimes hourly updates, he was battling necrotizing pneumonia, the bacteria was eating his lung tissue, he had ARDS, the bacteria also had burrowed into his hip joint and femur creating osteomyelitis, myositis, he was consistently tachycardic and tachypnic, he was unrelentingly febrile, he required a dozen blood transfusions, we were losing him. (Sepsis and ARDS) He had also developed an enormous clot (DVT) in his left leg that was persistently shooting bacterial emboli into his blood stream and attacking his organs making it nearly impossible to get the septicemia under control. The pain was excruciating and his body was shutting down. It was torture to watch him suffer. During this time he was placed in a medically induced coma and on a ventilator to keep him breathing and give his struggling body a rest. His body simply couldn’t take the destruction the infection was doing to his body. We watched as our boy was slipping away from us, a machine breathing for him, round-the-clock ICU nursing supervision, ice packs surrounding his frail body to keep his fever from boiling his blood. It was hell on earth.

The bacterium ravaged his body and was destroying his organs. Then, the worst day of our lives came, a team of a dozen doctors and nurses were waiting for us in the conference room, they needed to speak to my husband and I immediately. We did not want to leave our sons bedside, but Joey’s nurse insisted we come to hear what they had to say. There are no words that can explain what shock feels like, maybe a mix of terror and numbness – but that is undoubtedly what was felt as we listened. Our son was dying they said, the sepsis was just too severe, Joey’s lungs were going to give out, his body was too weak to continue to fight, they were losing him and unsure if any amount of medication, surgery or interventions would save his life. I cried, I panicked, I yelled, I pleaded, then I cried some more. My husband sat there, tears in his eyes, calmly rubbing my back, asking intelligent questions. He would later tell me he remembers shock and fear and not much else.

One doctor said he wanted to try surgery on Joey’s thoracic cavity, the surgery is complicated, never been done on a child, but maybe, just maybe we could have hope. Joey had already had several surgeries during his hospital stay so far and his body was so frail – would this surgery really work? We were willing to try anything. The surgeon, the brave risk taker that he was, saved our boy with that surgery. He slowly began to come back to us. He had to re-learn how to walk, swallow, and how to live with his new changed body. To say it was a difficult recovery is an understatement.

All in all Joey was in the hospital for nearly 3 months. He was on a ventilator for several weeks and after numerous surgeries, severe wasting syndrome, PICC placements, countless hours in pain, umpteen needles, physical therapy to learn to walk again and meds, meds and more meds he was finally discharged on October 16th. On that rainy October afternoon we left the hospital with our warrior of a son. Nurses, doctors, medical techs, child life specialists, respiratory therapists, and even the janitorial staff lined the Pediatric ICU hallway and cheered, clapped and cried as we walked out with our son. My husband and I literally lived in the hospital for months, the staff at the hospital had become our family and our heroes, and we love them.

To this day the origin of where the sepsis began is unknown. He did not fit into any high risk group, he was not ill; he had no open wounds, no recent surgeries, not even a cavity in his mouth. This fact haunts us every day – will it happen again? How do we prevent this? Will our other children suffer the same? No one knows. His doctors are wonderful, but they are also unsure of what the future holds for Joey.

If I could lay down my life to make him better, to make him whole again, I would. The doctors have told us he is lucky to be alive, a miracle of enormous proportions. We have been blessed with an amazing team of physicians who are always trying new ways or new medications to help Joey heal – to help him come back from the grips of death. Unfortunately sepsis is not something people can easily bounce back from. Joey’s life will forever be different. He is growing accustomed to his “new normal” – partial loss of his lung creates breathlessness, pain is a part of his daily living, doctors’ visits almost every day, physical therapy 3 times a week, 20+ pills a day, home instruction (he is not well enough for traditional school), masks when in public places…but he is a trooper. Joseph is a hero, an inspiration and his smile could light up a room. We are infinitely grateful each day that we still get to see that smile… Our son is a survivor. He is stronger and braver than we ever thought a child could be, and we are so proud.

Source: Jackie C (Joey's mother)

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