Carl Alford

Carl’s story

At just under 3 years old, my son developed a croupy cough with no fever or other concerning symptoms, so we carried on as usual. On day 5 of the cough, his cough developed a strider quality so I took took him to his PCP. At the time, his oxygen level was normal and his lung sounds were good except for the cough. He was started on steroids and sent home.

The following day he had improvement in the strider but began running low grade intermittent fevers. He continued to eat, drink, pee, poop and appear as expected. When I woke the following day but later than Carl’s usual 6am wake up call, I ran into his room and found him lethargic, working hard to breathe and had very high fever.

He’d never had a fever that high before, I medicated him and contacted his doctor. We both hoped his breathing effort and lethargy would improve with reducing his fever. When I listened to his lungs, they were clear but his oxygen was low. After his fever had reduced, there was no improvement with his breathing so we went to see his doctor. She gave some breathing treatment and ran an in-office blood work. After 2 breathing treatments, he lungs sounds became very concerning, he breathing did not improve and his blood work showed he had a bad infections. So we went to the ER.

In the ER, Carl was diagnosed with RSV, pneumonia, and asthma. Before being moved to his normal hospital room on the standard peds unit, I requested respiratory therapy to come and look at him again. His was placed on a high flow oxygen that upgraded him to pediatric ICU. We spent 11 hours in the ER before he got there.

On arrival to the ICU, they immediately upgraded him to bipap which was unsuccessful at helping him breathe, so he was intubated and they were again unable to improve his breathing. He was then upgraded to an oscillator that also failed to improved his breathing. Over the course of the first 4 hours in the ICU, he was placed on VV ECMO. He continued to deteriorate cardiac wise and was placed on VA ECMO. He continued to deteriorate and was given an atrial septotomy with stent (a large hole was placed between the atria on of heart) to reduce the right side heart strain, a drain cannula (VA-V) was added and he was placed on an adult ecmo pump as he had already maxed out the peds pump.

He developed disseminated intravascualr crisis, where he lost all the blood parts. He received numerous transfusions of red blood cells, platelets, plasmas, and cryo. His INR topped at 6.6, normal is 1.

Along with DIC, he developed pulmonary edema, total opacities, complete biventricular failure (he had no heart beat or breath sounds) liver failure, ischemic bowel with multiple bleeds, kidney injury, and ischemic injury on both legs. (Sepsis and Disseminated Intravascular Coagulation (DIC))

After 14 hours, he was given broad spectrum antibiotics and was later diagnosed with MRSA pneumonia. (Sepsis and Pneumonia, Sepsis and MRSA)

After 2 weeks his heart function resolved and we were able to stop the VA ECMO. The following 4 weeks were on VV-V ECMO. We had to place a trach and he was eventually able to wean off EMO entirely.

We spent a total of 106 days in the cardiac ICU and after his amputations and skin graft surgery we were able to go home. He was still trach/vent dependent, required gastric tube feeds and extensive wound care. He was also still on withdrawal medications from the sedation meds he had been on.

He was able to wean off the trach and feeding tube (6 months for each) and he’s able to walk, run, climb and play with his peers today.

We are blessed with a nearly able-bodied little boy. He has issues with chronic wounds on his salvaged foot and stump and he’s had some bone infections and surgeries because of it.

He also has permanent lung damage but it only seems to be a small issue when he’s sick.

The horrors of sepsis will plague me the rest of my life but I have some comfort knowing these are memories my son will have little of. Being so young had its blessings.

I will also forever be humbled by the resilience of children. Never in my life have I seen such joy despite illness and loss.

Hug your babies and be grateful for every day.

Source: Catherine Clark/Mother