Tyler's Unexpected trip to Ohio
Meet Tyler. Tyler was born one month pre-mature on November 8, 2006. Tyler was born with Down syndrome, AV canal heart defect, and also Hirschsprung's disease. Within one day of not passing any stool, the Doctor's suspicions were confirmed thru biopsy that Tyler would have this disease of the intestines. Since his birth he has had SIX HORRENDOUS surgeries to try to help the condition of his bowels, and they have resulted in a permanent colostomy, which is a bag on his abdomen that he poops into. Tyler has also endured Open-heart surgery and countless other surgeries related to his intestines and other body parts. I have honestly lost count, but I think we are about to prepare for our 18 surgery/procedure under anesthesia.
In the spring of last year, Tyler began bleeding out his rectum daily and also from his colostomy with bloody stools. After many many doctor visit and tests, we have decided that best place of treatment is the Colorectal Center at the Children's Hospital of Cincinnati. There were not any doctors at Chapel Hill, or Duke, or anywhere in NC that could assist us further, so after some research we were happy to be transferred there for our care.
In visiting Cincinnati in Nov of 2012, the Doctor decided that Tyler would need to have surgery to remove some damaged tissue and he suggested that since he was going in anyways, WE SHOULD TRY AGAIN to reattach his intestines and get rid of the colostomy bag. This news EXCITED AND SCARED US, but we are cautiously optimistic and are ready to get our boy better. The Dr. is going to try a new surgery technique and some interesting other procedures which he hopes gives us a better chance of success.
I am so worn out from having my son in pain with continual bleeding. I want to get him fixed and I know Tyler would like to better too!!! We have had many people ask how they can help. First, please pray that Tyler's surgery is successful. We plan to be in Cincinnati for several weeks and then we will have to go back again for another week, a month after we get home, not including any other follow ups or complications.
In our journey to this point, We have gathered more medical bills than we can handle and are overwhelmed at the costs we are about to incur with surgery out- of- network travel, and lodging. We are not able to get on the waiting list for the Ronald Mc Donald house until 24 hours prior to his surgery and will not find out if we can stay there until we are on route to Cincinnati. The woman today recommended we book our hotel, as we cannot both stay in Tyler's room on the floor, and he may also spend some time in ICU. We weren't able to stay at RMH last visit either, so I am not very hopeful of this option. But I am hopeful that when situations are bleak, God provides a way. Throughout Tyler's life and during his various medical journeys, we have been blessed with an amazing support system in our families, friends and communities.
We would be forever thankful if you supported us on this journey in prayer and/or financial support. Know that whatever you give it is appreciated from the bottom of our hearts. Thank you so much for your consideration.
