Colton is a newly 6 month old baby who has had to fight for life before he was born. Colton's mom endured a complicated pregnancy that included a rare diagnosis of Absent Ductus Venosus and IUGR, a placental abruption, bed rest, and several hospital admissions while trying to keep healthy and growing safely inside of her. After a long and restless 35 weeks, he was born via emergency C-section. Colton continued his fight as he quickly lost his ability to breath and required the life saving drug Serfactant. As the NNP's attempted to give him the medication, Colton stopped breathing on three occasions, causing the skilled professionals to give him the medication in a way that risked it going into his stomach, rather than his lungs. Colton endured, and soon he was able to breath using CPAP, then nasal cannula, then finally on room air. Colton required an NG tube to help him make sure he was able to eat and gain weight- as Colton was always a tiny little guy. Colton was finally able to return home without his NG tube after 30 days in the St. Johns NICU.
Upon return Colton was followed closely by his caring pediatrician and life started to settle down (well, as settled as it can be with kids aged 10, 4, 2 and newborn at home). In August Colton's mom returned back to work at her beloved elementary school where she is a Speech Language Pathologist. At an appointment in early September Colton's pediatrician noticed that his weight was not gaining as nicely as she had hoped, and put in referrals for feeding therapies, as well as GI and ophthalmology referrals. On September 12th after a continued decline Colton was admitted Masonic Children's hospital where he was diagnosed with Failure to Thrive. Colton underwent several blood, x-ray, and video swallow study assessments to try and determine why he was having such difficulty eating and gaining weight. Due to much frustration between Colton's parents and medical team, there was not a clear cause for his difficulty and he was sent home on September 17th with an NG tube and scheduled follow up appointments.
After two days of demonstrating significant pain and difficulty eating, Colton returned to Masonic Children's on September 20th where he was admitted again, this time followed by the GI team. Colton's parents continued to advocate and share concerns, and it was suggested that Colton had a milk-protein intolerance that was causing him pain, and that he was experiencing colic. Three nights into Colton's admission, he demonstrated concerning pain and was taken into an emergency ultrasound of his stomach where they found he had a large gallstone. Colton's care team and his parents continued to have differing opinions as to Colton's pain, and ultimately Colton's mom and dad requested a transfer to Children's Hospital in MPLS in hopes for a second opinion, and a desperate attempt to have more professionals meet Colton and help him.
After 9 hours in the Emergency Department, Colton was admitted in-patient at Children's on September 24th with significant failure to thrive and GI concerns. Children's medical team acted fast and followed up with several procedures to investigate causes for his pain and now disinterest in eating at all. Colton has had an additional stomach ultrasound, blood draws sent to the Mayo clinic, upper GI endoscopy, brain MRI, and ophthalmology consultation. After fast acting, compassionate and collaborative care, Colton is finally acting like a 16 week baby should. To see Colton smile and interact and coo is something he has not done for his parents, which highlights the impacts of the suffering he has had to endure. Colton is currently on strict feeding guidelines with support of NG tube feedings, medications to help dissolve the gallstone, medications to help with reflux and medications to help his stomach relax and expand to intake more food.
In October, Colton was hospitalized in the PICU as a result of RSV. Two days after his discharge he began demonstrating myoclonic jerks. An initial EEG was essentially normal, and Colton’s parents were told to follow up with a neurologist just to make sure he was doing alright.
At the end of November Colton suffered from a seizure requiring emergency ambulance ride as he became blue and unresponsive. In a perfect storm- everyone in Colton’s family was covid positive, leaving only his mom to go with him to the hospital while dad had to stay home with the other children. In this hospitalization Colton had a repeat EEG that was significantly different than his first, and it was determined that Colton is suffering from infantile spasms- a dangerous and unpredictable form of epilepsy. He began emergency use of Keppra and a steroid to help calm down his brain. He will continue this trial until a repeat EEG at the end of January. Because of the nature of this diagnosis, Colton’s prognosis is unknown.
Colton will have full exome genetic testing done, and now is managed by a pediatric epileptologist in addition to GI, failure to thrive and outpatient therapies. Colton’s parents have gotten an appointment at the Mayo Clinic for a second opinion for all his diagnosis in February.
We keep faith and continue to live on these words as we continue to seek answers and peace for Colton, our warrior
“Fate whispers to the warrior, ‘you cannot withstand the storm’. The warrior whispered back ‘ I am the storm”.