Ed. note: This is an updated version of a post that originally appeared in January.
Bryan Thomas doesn’t remember what happened at the eighth-grade graduation party in June, the night he almost lost his life. He knows only what he’s been told.
He was celebrating at a sleepover that Saturday night when he leaned over to his friend and said, “I have a headache.”
“My friend asked if I wanted an Advil, but I said I would tough it out,” Bryan says.
Two or three minutes later, he told his friend the headache was getting worse. He took three ibuprofen, but soon sat down and said, “I can’t go on.” He began rocking back and forth, saying how scared he was.
Two and a half years ago, 15-year-old Adam Stedman had a seizure out of the blue.
“I heard a noise and went in and saw him in a full-blown tonic-clonic seizure,” says his mother, Amy. Paramedics brought him to the hospital. Any further seizures could mean trouble, they told the Stedmans. “They said, basically, ‘you’re allowed one seizure in your life,’” Amy recalls.
A few months later, on an August evening around 10 p.m., Adam spoke with his girlfriend on the phone. She later told Amy, “Go check on him—he sounds kind of out of it.” That turned out to be a second seizure.
The third seizure, the worst yet, happened on Nov. 11. Adam had the day off from school, and his girlfriend was visiting. The family was eating dinner when the seizure started. It lasted nearly five minutes, and Adam was turning blue. Another seizure followed within weeks. The local hospital in Connecticut did an MRI, and the Stedmans received a call: “Can you come in before the office opens?”
Yousef Alrkhayes was just two days old when a doctor burst into his mother’s, Khadjad’s, hospital room with unsettling news. “[He] came into my room and said that Yousef has high pressure in his heart and they didn’t know why,” she recalls. After you are discharged, the doctor continued, don’t even go home—go straight to the main hospital.
In the four days it took Khadjah to recover enough to move with her son, Yousef made little progress. His heart was still under stress and no one could say why. As their doctor sent them on their way, he begged them to ask for an echocardiogram at the hospital.
Khadjah could tell from the sound of his voice that he was worried. …
When my son Peter and I go out, it’s not unusual for people to fawn over him a bit.
“What a happy kid.” “He’s so smart.“ “It makes me smile when I see him,” we often hear. As a mom raising a child with as many health issues as Peter has faced, these comments brighten my day.
Peter was born with anarteriovenous malformation (AVM) in his liver, meaning his veins and arteries weren’t connected properly. When he was just seven months old, the AVM completely disrupted the blood flow to his liver and small intestine, causing multiple holes in his small intestine. He became gravely ill after that. At our local hospital, Peter had one surgery to remove the AVM and three more to salvage what was left of his intestines.
When it was all over, Peter had four ostomies (a surgical opening made in the skin as a way for waste products to leave the body) and a gastrostomy (a surgical opening into the stomach, where a feeding device can be inserted). He couldn’t digest food properly, so he had to receive all his nutrients intravenously (IV), through a medication called total parenteral nutrition (TPN).
Having a child on TPN is a lifestyle, for both patient and parents. It requires refrigerating IV bags and medications, and storing huge amounts of tubing, caps, alcohol preps, pumps, dressing change kits, and other supplies. There is a daily ritual of preparing the medicine and hooking it up, and because TPN requires a permanent central line for IV access, there is always a risk of infection that needs to be closely monitored. …