Hannah Schooler

Survivor

Before her major health crisis, Hannah was a smiley, feisty 14-month-old. Born with Down Syndrome, she had several congenital issues requiring surgical repair in her first year. Her complicated surgical history includes repairs for duodenal atresia and esophageal atresia, as well as open heart surgery to correct a major congenital heart defect. She is no stranger to overcoming adversity, and she has always managed to amaze her family, friends and doctors with her strength and resilience.

That’s why, on May 3, 2018, when I brought Hannah to the local emergency room in the middle of the night because she had been vomiting for more than 24 hours and was not having sufficient wet diapers, I figured we’d get checked out, get her some IV fluids and then be on our way home.

Instead, what unfolded was beyond our worst nightmare.

We were initially told that Hannah had an ileus, or small bowel obstruction, that would resolve mostly on its own, but by Sunday morning May 6th, she woke up to a fever of 104.6 and a heart rate in the upper 220s. Her heart was in supraventricular (SVT) rhythm and our quiet little hospital room quickly filled with medical professionals, a code cart, and a hospital chaplain.

Over the course of the next few hours, Hannah’s situation deteriorated further and further. She was moved to the pediatric intensive care unit where we were told she was septic. Her blood sugar level read 12. She was having difficulty breathing. Her intensivist ordered at CT scan through which we discovered that her bowel had perforated. The contents of her gut, rife with bacteria, had invaded her once sterile peritoneal cavity. (Sepsis and Perforated Bowel)

Hannah was rushed into the operating room for surgery that evening. By midnight, her surgeon came out to let us know how things had gone. He had removed about 10 centimeters of her damaged small intestine and reconnected what was left. The surgery was successful, he told us, but not without incident. He explained that as she was being transferred from the hospital bed to the operating table, she coded. Her heart had stopped. She was quickly resuscitated and everything went relatively smoothly from there.

I didn’t hear a whole lot after being told that my daughter’s heart had stopped beating. I just kind of floated through the hospital, into the elevator, and back up to the PICU floor. The only things keeping me grounded and present were my husband’s strong, warm hand in mine and the silent “Hail Mary” prayer I kept repeating over and over and over in my head.

Hannah had survived the surgery, but she was in critical condition. Her blood pressure on the monitor when we got into her room was a frightening 33/11. I watched the monitor for hours in disbelief. Her amazing angel of a nurse was quietly flitting around the room, administering medications, adjusting ventilator settings, measuring urine output and checking her blood sugar. There was so much to do to keep Hannah stable that night that there were several other nurses in the room helping.

It wasn’t until the next evening that we were pulled aside and given “the talk.” It involved words I had never heard before, words that shattered my heart, words that I will never EVER forget. “Septic shock.” “Not responding to treatment.” “She may not be strong enough to make it through this.” “We’re doing everything we can.”

So that night, my husband and I remained at her bedside in prayer. Our pastor, her godfather, and our dear friend and Hannah’s former NICU nurse stood together in solidarity and in prayer, trying somehow to process what was happening while another dear friend stayed at home with our three sons. How could things go so badly in what seemed like an instant? This child who had overcome so much was now fighting her biggest battle with sepsis and that might be the one battle she was going to lose. It was heartbreaking.

The next morning, her surgeon and intensivist came to tell us that they were running out of options. There were two more things they could try, but there was no guarantee she was going to make it through the morning. We were shocked and devastated, but rooted at her side praying incessantly.

Somehow….just hours later… This child whose blood pressure wouldn’t stabilize, this child whose kidneys had basically stopped functioning, this child whose temperature had gone over 105 degrees and then plummeted and then soared back up again in a seemingly endless cycle of dysfunction, this child whose extremities were cold and swollen, whose capillary refill took an eternity, whose lactic acid levels were extreme and dangerous….this child whom we adored….somehow over the next 12 hours started miraculously to turn the corner.

Her vitals started to stabilize. Her temperature fluctuations weren’t as extreme. Her ventilator settings had to be weaned. She started producing urine–first in drips, then in glorious streams.

She was still very very sick. The sepsis infection was raging through her body. She was horribly swollen and her white blood cell count was still very high, but suddenly trending down. Her lactic acid began to trend down. Her blood gasses began to show improvement. And slowly, so slowly, the medication list began to shrink. Our Hannah was going to survive this horrific infection.

Nearly two months after this nightmare began, after nearly four weeks intubated, paralyzed and sedated, we were able to take Hannah home. She has a long and grueling recovery ahead. She suffers from extreme weakness, there has been unspecified injury to her nervous system and she is grumpy and uncomfortable most of the time, but she continues to make small improvements every day. Recovery has proven to be challenging for her as well as for our whole family.

We have taken her to all kinds of specialists to help support her through this period of rehabilitation. She regularly sees her neurologist, cardiologist, and gastroenterologist, and has weekly sessions with physical, occupational, speech and feeding therapists as well as with a chiropractor.

No one really knows what to tell us as far as how recovery will go. She may come back to us fully. She may not. All we know is that we all adore this precious baby girl. And we will all go to the ends of the earth to give her everything we can to help her along in recovery. The rest is in God’s merciful and loving hands.

 

Sepsis and Children

Source: Lauren Schooler, mother

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