Tell us about your story.
Our eldest had been diagnosed with Hirschsprung's disease
and since it's more common in boys than girls it wasn't a surprise when our only son was born and showed signs of it as well. At about 12 hours old, he was transported from the NICU at the hospital he was born at to the University of Kentucky’s Children's Hospital
, a three-hour drive from home.
Given the family history, pediatric surgery agreed that it was the most likely diagnosis and set about running the tests, and his surgeon went ahead and scheduled the first surgical slot he could for the corrective surgery. The following week we got the results from his biopsy back: Hirschsprung's disease. Ian was a week and one day old for his six hour surgery. The surgery went well. The vent was removed within a few days after surgery. He was a bit lazy on the feeds and some discoordination with his tongue. His doctor set a minimum that he needed to eat, and so what happened was he would eat as much as he could on his own, then the rest was sent in via NG tube
After he got to a certain volume they removed his PICC line
and was transferred to the step down unit. The step-down unit is where things get interesting. We're about three weeks into his stay, and the motel we were staying at rented our room out to someone else without giving us a chance to renew. We were only paying a few days at a time since we were just waiting for weight gain for a discharge. So we had to quickly throw everything in the car and move to a different motel, in the middle of some event that was going on in Lexington that day. We also rented a few days at a time there for the same reason with better results. And Ian just didn't seem to want to gain weight for some reason. We were looking at a possible failure to thrive diagnosis, which they were trying to avoid as much as they could.
This had started to get pretty expensive so we were referred to the Colette Foundation
, and to Ronald McDonald House. RMH required a negative covid test within the last three days, so we went off to get one each. I tested positive. So, I'm crying my eyes out because I can't see my son for I'm not yet sure how long. Then once I stop crying over that I'm right back at it because there were three premies up in his pod, and two infants who just came off of CPAP therapy, and another who had just gotten put ON cpap therapy.
We informed the NICU, Ian got put in isolation until he could test out. I couldn't see Ian even after I was released by the health department on December 11th, because my husband was still symptomatic and I couldn't isolate from him in a motel room. Somewhere in this mess the Colette Foundation approved our application, and we worked out that they would pay on the credit card that we had been using to pay for the extended stay motel, food, and laundromat during our stay. While it didn't pay for all of the expenses it was a huge chunk and a huge weight off of our shoulders.
Eventually, Ian was discharged after about a month long NICU stay. My husband was still symptomatic so I called my parents to pick me up to get Ian and go home to our two daughters, whom we had been away from this entire time. Ian was fine. The girls were happy to see us and FINALLY meet their baby brother. A couple of days later my husband had to call 911 to take him to the ER where he was admitted for dehydration. He was told that if he had waited another 24 hours he would have died from electrolyte depletion. Ian is now five months old, teething, and trying to fight us for whatever food item we may have. He's growing, thriving, and loves his sisters.
Would you say there was anything unique or special about your case?
Well, the covid diagnosis and having a nurse swear over the phone when they heard about the positive test was unique.
Special? Our girls couldn't wait to meet their brother! Sometimes they didn't even want to talk to me if I wasn't in the NICU for them to see him.