Preparing for Surgery

On April 28, 2010 Keyan will have Bladder Augmentation and Mitrofanoff surgery. Keyan was born with his bladder on the outside of his body and therefore it is not functional. After a long 10 years of living with unrepaired Bladder Exstrophy he will have surgery to create a new bladder and house it inside the body! The following is a simple description of what they will be accomplishing:

Bladder augmentation, also called augmentation cystoplasty, is a complex reconstructive surgical procedure where a portion of intestine or the stomach is attached to the bladder to replace or increase the size of the organ and to improve its ability to stretch. The Mitrofanoff procedure is when the appendix (if it is available) is taken from it's natural place in the bowel. The appendix is shaped like a straw and one end is attached to the bladder whilst the other end is brought out onto the child's tummy. The child is taught how to pass a catheter down the Mitrofanoff in order to empty the bladder thus gaining urinary control.

We have been working very hard to prepare Keyan for this big surgery and recovery. We began by talking about Bladder Exstrophy and that many others have this condition, he is not alone. Just this fact alone brought comfort to Keyan. Keyan has also been very involved in choosing a doctor and hospital as well as being able to ask questions and be a part of all discussions regarding his surgery. He has been seeing a Psychologist at Children's Hospital as well as a School Psychologist which provides him with other safe people that he can talk to about his thoughts and feelings. We have gotten the books 'Living With Bladder Exstrophy', a book of stories from others affected by Bladder Exstrophy, 'This is Me', a fantastic work book written to help children understand Bladder Exstrophy and its implications and to give children a tool to prepare themselves, 'A Story About You....and the Boo-Boo on Your Bladder', another book to help Keyan familiarize himself with Bladder Exstrophy and lastly, the DVD 'Catheterization of Continent Urinary Stomas' which shows others his age who have to catheratize and how it is done. All of these books can be purchased through The Association for the Bladder Exstrophy Community and the DVD from Johns Hopkins.

As his surgery date approaches Keyan and I will also keep a journal in which he writes down his questions, thoughts and feelings and I write back to him answering his questions and addressing his feelings. He will continue to read the books and talk to our safe people, all at his own pace. Lastly, we will attend an on line tour of the hospital so that he knows a bit of what to expect. We hope that these steps will help Keyan prepare for what is to come. He is a joy and we wish the very best outcome for him with his Sensational Surgery!