The night of October 11th, I put my son to bed after a delicious ice cream dinner following a dog walk and fishing expedition out of his tree house.  He had a cough for a few days, running some low grade fevers, but was eating, drinking, playing, pooping.  The morning of October 12th, I woke up my son. Lethargic, tachypnea, Sats 93%, febrile 102.7.  Our lives have forever been changed.

He was diagnosed with. RSV/MRSA pneumonia. Rapidly went into ARDS, intubated at midnight and VV ECMO initiated 4 hours after that. The oscillator wasn’t able to get his Sats higher than 40%. NEAR total opacities, tidal volume of zero.

A few hours after that, he went into cardiogenic shock/myocarditis. He has pulmonary edema further damaging his lungs and an EF of zero. VA-V emco was initiated. But the alarms didn’t stop; he was aggressively dying. He was brought to the cath lab for a septotomy.  After that procedure, we were told he was stabilized. We were told, if he lived, he’d need a heart transplant.

We were finally allowed back to see our son. But he wasn’t stable, the ECMO machine was still alarming. His monitor was still alarming. There were still 20plus providers in our room. My baby was still dying. His INR was over 6, frothy bright red pulmonary edema fluid filled up his ET circuit all the way to the ventilator. His aline was FLAT.  They started down the list of little things that might help, decided to place a chest tube for what appeared to be a small pleural effusion. We didn’t have to leave the room for the procedure. My son was going to die. His death was imminent.  I was watching what I believed to be the last few moments of my son’s life. 350mL was tamponadeing the ecmo cannulas. The noise in the room started to quiet. 350mL was life or death. That was the turning point in the bowels of hell where we’d live for a while.

Carl had RSV/MRSA necrotizing PNA, ARDS, Cardiogenic shock, pulmonary edema, septic shock, DIC, liver failure, ischemic injuries to his limbs, kidney injury, septic ileus, multiple GI bleeds. He had no breath sounds, he had no heartbeat, no pulse, his INR was 6.5. He had no blood count. He was 7 liters positive to get a blood pressure that wasn’t even high enough to profuse his feet.  His ecmo circuit was a combination of an adult pump with pediatric membrane. When he was initially cannulated, he was at max flows available for the peds pump. So he got an adult pump to give his profusionist room to accommodate his septic disease.

My baby held on so hard, when the paralytics were allowed to wear off, he reached for me. He held me so tight and never let go. He never has a neurological event. His heart started beating and after 2 weeks and he was able to be decannulated off VA ecmo and his EF was 60%. He still required high flows and the large drain cannula in his right fem stayed.

He was extubated at 4 weeks with a plan to use less invasive BiPap to keep his lungs open. He ended up aspirating vomit from the BiPap and after the preceding bronch, it was determined that his secretions would be impossible to manage without the assistance of a tracheostomy. We trach’d him the next day. He was decannulated from VV-V ECMO two weeks later and his septotomy stent was removed at the time as well. At this point he prognosis better, there was an expectation that he, in fact would live.  And it was expected that his lungs would recover but how much and how fast was not known.

From Nov 10 to Dec 21 we waited for his body to do what it would to heal his ischemic legs.  He worked hard in therapy. He recovered his foot drop and got stronger every day. We were able to wean the vent to just PT use only. He walked the halls the morning of his amputation/GTube surgery.  He had a transmetatarsal amputation of the left foot, toe tips on right foot and large scale debridement of both legs.  He returned to the OR 1 week later for skin grafting.

Four weeks non weight bearing. Four weeks no foot drop boots. All ankle gains were lost but he gained his feet.  He had 2 weeks left of hospitalization before we were sent home.  My son was unable to be admitted to an inpatient rehab due to the ventilator.

So, home we went. With a ventilator, patchy home nursing care, a 5 day a week PT schedule, weekly OT/SLT, every other day wound care, and all the various specialty care physician appointments.  Carl is thriving at home. No ventilator needed. April 17th, his tracheostomy was removed. He’s playing, laughing, dancing, sword fighting, and being his normal wild silly self.  He’s meeting his caloric needs by mouth.

My son refuses to live by others expectations. He was expected to die. He was expected to need a heart. He was expected to have massive brain trauma. He was expected to have a left BKA. He was expected to be trach/vent dependent for much of his childhood.  Carl is determined live the life he desires and deserves.

I’ve spent month trying to connect with other mothers like me.  What I’ve found is that Carl really should have died. Any one of Carl’s diagnoses carry a very high mortality rate. He had so many. There aren’t mothers like me because there aren’t many, or any, survival stories like Carl’s. I hope that Carl’s illness and recovery can give hope to other parents at their child’s bedside. I hope that his clinical course can be a case study and save lives of future children in need.  The hope that something good can come from my son’s suffering, it makes the weight of his pain and losses feel lighter.

Story submitted by Mom Katie