Colton

Colton is a twin, born at 31 weeks and 6 days. At his 7-day routine head ultrasound, the doctors discovered a grade 2-3 intraventricular hemorrhage (IVH). He was transferred 2 hours south to Wisconsin Children’s Hospital while his twin remained at their local NICU.  

After a few days of close monitoring, they noticed increasing pressure on his ventricles, and he quickly became symptomatic. He was diagnosed with hydrocephalus, and at just 16 days old, doctors placed a ventriculoperitoneal (VP) shunt to treat it. Colton was released from the hospital at 58 days old. 

It was 8 months before his shunt had failed for the first time. At first, imaging didn’t show anything concerning, but we were kept inpatient due to a positive COVID test Colton had outside the hospital. However, when he was retested at Children’s Hospital, it came back negative. I was adamant that no one in our house or family was sick, and Colton was not sick. It had to be shunt-related. He wasn’t responding to us; he was sleeping through everything and vomiting nearly every hour. The following day, the hospital repeated imaging and was able to see that the catheter was pulling out of the ventricle. The neurosurgery team decided to place a programmable shunt, as they explained Colton’s current shunt was no longer a good fit for his quick head growth.

Colton’s new shunt lasted about two months before another failure would occur, this time due to a blood clot in the catheter. Colton had his second shunt placed, and we were home in 4 days! Everything seemed to be going well at discharge, and the team felt comfortable sending him home after his imaging looked promising. But only 5 days later, on Colton’s first birthday, he experienced yet another shunt failure.  

During transport to the hospital, Colton quickly went unresponsive in the ambulance. Emergency surgery was performed at 1 am to relieve the pressure on his brain. In that surgery, his doctor decided to place an external ventricular drain (EVD) to monitor for clear cerebrospinal fluid (CSF) before going back in and placing a new catheter. The hope was to avoid any other blood clotting-related shunt failures. Colton was inpatient for 5 days while monitoring the fluid before they placed his most recent VP shunt.

Now, at almost three years old, Colton is thriving. By his third birthday, he will have gone two years without a shunt failure and is doing exceptionally well in therapy. He is running, jumping, smiling, giggling, and loving life with his twin, Cason. Both boys have been diagnosed with autism and are nonverbal. Since Colton is unable to communicate when he’s not feeling well, we continue to monitor him closely for any signs of shunt complications. We’re thankful all has been well this past year!

 

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