Welcome!

My hope is that there will be some resources here for families with special needs. Instead of reinventing the wheel, I have included resources that point to other resources. The posts here are simply reporting some of the things we have tried to make our daughter's experience more comfortable and productive. Please add any experience you have to help us and others help our children.

Saturday, February 16, 2008

Granulation

We are fighting the granulation battle with Macayla's feeding tube. For those unfamiliar with granulation, it is tissue that builds around the feeding tube that is caused by the body trying to heal the tube site closed. It is red, meaty, and oozes and bleeds. It can be mistaken for an infection. The red tissue grows out in all directions and forms a rough ring around the site. It is prone to bleeding. For almost six months last year we lived with constant blood in Macayla's stomach, low feeding tolerance, and much discomfort. She had granulation on the inside of her stomach at the site as well as on the outside. We often must use silver nitrate sticks to cauterize the granulation tissue. We have used a nystatin cream around the site and it helps to control it, but we never get rid of it completely. Macayla's site should be similar to an ear piercing that has healed. It should be clear skin around the site. There are some recommendations by parents on Parent-2-Parent forums about different mixtures of creams and ointments that have helped. But every child is different and will respond differently to a given treatment. Doctors should be consulted about anything used around the site, but often a doctor's office can become ineffective. Parents have found many things that work that doctors would never suggest. We are fortunate that most of our doctors and nurses are willing to try many things. The surgeons want us to stay away from a wound-care specialist because wound-care can create granulation that is out control. We have not tried every suggestion yet on Macayla, but the things we have tried have had minimal or no success so far.

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