Milan Matteo was born 10 weeks early due to preeclampsia and growth restriction. He made his big entrance to this world at 2 lbs 4 oz. On day 3 of life, Milan had a bowel perforation requiring his first surgery. Two weeks later after no improvement, he went to the OR for the second time, requiring the placement of an ileostomy.
About a month later it was time to put him back together since he was not able to tolerated feeds and his stoma had protruded. He lost more intestine but ended up getting reconnected yet he was never able to pass stool.
Surgery number 4 happened just 3 weeks after, this time it was an obstruction. The recovery for this surgery was the worst, we got a call the next morning from the doctor letting us know his body was in shock and really really sick.
He was able to recovered but yet again not able to pass stool and his belly kept getting distended.
On December 5th we were told he had perforated again! He went to the OR for the 5th time for an emergency surgery. Just two weeks after he almost lost his life due to the rough recovery. We were in complete disbelieve and I as a mom was preparing myself to let him go. I just couldn't wrap my head around the idea of this little tiny body being able to handle so much. I almost lost faith on him but he proved me wrong and showed me the SuperMilan he is!
He now has an ileostomy AGAIN! In total he has lost 50 cm of intestine. He has never been able to tolerate full feedings, has had problems with dumping, dehydration, and electrolyte imbalances. He is being treated as a short bowel baby. His intestines don't have the ability to fully digest and absorb nutrients essential to live. Due to this he is fully dependent on TPN, nutrition he gets through his veins. The current medical team does not have a clear explanation or diagnosis for all the complications and intestinal issues he has had.
The plan was to take him for a 6th surgery where would have to lose more intestine due to a new obstruction on the lower part of his bowel, and lose his ileocecal valve, which would have a life long impact on him.
The hope is to get Milan into a Top Intestinal Rehabilitation program as soon as possible for a second opinion. Hopefully to finally be able to get some answers and prevent him from having more drastic surgeries and complications in the future. Doctor's at Cincinnati Children's Hospital have been advocating for Milan to get there, but it has been a real fight with insurance, doctors, and people who believes this is almost an impossible task.
As a family we have already suffered a great deal financially with out of pocket expenses, not being able to work as much. We could use your help in getting Milan to Cincinnati Children's, and should a transfer happen, I as a mom would have to temporarily relocate until Milan receives the specialized care he needs and a plan to bring home to be shared with the team here in Chicago.
The funds would be use for bills, food, transportation, and all out of pocket expenses both here in Chicago and in Cincinnati. I appreciate your help in helping get SuperMilan the care he deserves!