OUR JOURNEY WITH HIRSCHSPRUNG'S DISEASE
My son Hudson was born on September 27, 2016. In the first 24-hours, he failed to pass Meconium (a newborn infant's first stool). On the second day, there was still nothing. Hudson was rushed from our local hospital to Children’s Hospital of Michigan in Detroit where he spent the next 3 months of his life.
After several tests and surgeries, the doctors finally diagnosed Hudson with Hirschsprung's disease, a rare condition present at birth as a result of missing nerve cells in the muscles of the baby's colon. The disease has four categories and unfortunately, Hudson has total colonic -- the worst type (part of his small intestines is affected too).
He finally came home right before Christmas but has been admitted back to the hospital over 63 times
. There have been numerous complications such as enterocolitis, sepsis, dehydration, and several line infections. Even through all his tough times, he is such a FIGHTER and an inspiration!!
Hudson has an ileostomy and Mucous Fistula. He is also on TPN 14 hours a day through a central line because he was also diagnosed with FTT (Failure to Thrive). His body does not absorb nutrients on it's own. He was scheduled to have an ostomy reversal and pull-through procedure but he needs to become healthier before that can happen.
This is where things get even more complicated. Hudson should be wearing an ostomy pouching system, but he can't wear one due to the way his stoma is placed and severe skin issues. I was changing his pouch six to eight times a day. We’ve tried so many brands and products, but they all caused his skin to blister. Instead of an ostomy bag, we use the “double diaper method” along with medical creams, stoma powder, and barrier cream products to thoroughly protect his skin.
Our insurance will not cover any diapers (we use approximately 20-24 per day) or any ostomy products for his skin. They also do not cover several of his medications. We have one-income in our household so that our son can have 24-hour care. Every day is a new struggle financially for our family.
If you are unable to donate, it is totally understandable but please keep Hudson in your thoughts and prayers!!