I want to share my experiences, so that other mom's like me, know that it isn't 'just them'.
Lately, Mateo has been having problems with his GT site, it has been red, and growing granulation tissue around it, which means a trip to the doctor, and a prescription for silver nitrate, which entails me, putting my son through physical pain and literally BURNING the tissue off of him. I HATE IT! It breaks my heart.
And on top of that, we haven't been able to find a pouch that works for his ileostomy. He is needing to be changed EVERY day, sometimes more. His skin around his stoma gets irritated and burnt from his stool, and I keep taking him in, but nothing fixes the problem.
It is so frustrating! All I can do is keep trying. TRIAL AND ERROR. But it gets hard to stay positive after a while. I have said so many prayers, tried so many things.... I wish it were easier!!