Keyan’s Sensational Surgery

By Nancy Mayginnes, HEA Board Member, and her son Keyan

This article is part of the blog that Nancy and Keyan kept to record Keyan's bladder exstrophy surgery in April, 2010. The entire blog can be found at keyansurgery.blogspot.com.

We will be keeping this blog to update our friends and family during Keyan's surgery and recovery. Just as important, we will use this blog as a chronicle of Keyan's journey through his surgery and recovery in hopes that it will help other children and parents navigate through their own surgical journey. This blog will also be something that Keyan will have forever, information about the decisions that we made for and with him as well as his thoughts and feelings while he is experiencing them.

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, a condition called bladder exstrophy, 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 his 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 in which 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. In the Mitrofanoff procedure, the appendix (if it is available) is taken from its natural place in the bowel. The appendix is shaped like a straw, and one end is attached to the bladder while the other end is brought out onto the child's abdomen. The child is taught how to pass a catheter down the Mitrofanoff channel 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 by telling Keyan that many other people have this condition and that 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; this provides him with other safe people whom 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 workbook written to help children understand bladder exstrophy and its implications and to give children a tool to prepare themselves for surgery; and 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 other children who have to catheterize and how it is done. All of these books can be purchased through the Association for the Bladder Exstrophy Community, and the DVD is available free of charge from the Johns Hopkins Children’s Center.

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 will 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 online 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!

Saturday, April 3, 2010


KeyanSmiling

My Doctors!

Keyan with Dr. Michael Mitchell            Keyan with Dr. Jill Benchell

Dr. Michael Mitchell is my urologist, and he will be doing my surgery. He is very nice and funny and always answers my questions. Dr. Jill Benchell is my talking doctor. She helps me talk about how I think and feel about the surgery stuff. She has cool games.

Keyan Got an iTouch!

Keyan Got an iTouch

I got an iPod touch today, and I am very happy! I got it so when I go get my surgery I will have movies and pictures and games! I am very happy!

Four Days until My Surgery!

Today we met with Dr. Jill Benchell, Keyan's psychologist. It was our last appointment before the surgery. Keyan has been feeling more anxious about the surgery itself, what his friends may think about his surgery, and whether the surgery is going to work. He also has had strong feelings about why his bladder is not like everyone else's. Dr. Benchell talked to Keyan about the specifics of the surgery and answered questions ranging from ”What will my room be like?” to ”Is it going to hurt?”

Dr. Benchell also gave Keyan some strategies about how to answer questions from other children about his surgery and reassured Keyan that it is up to him to decide what and how much he wants to tell them. Keyan has decided that he is going to tell his classmates that he had stomach surgery and that if they ask what was done exactly, he will say, “I was asleep during the surgery. I don't know what they did.” or ”I don't know what they did in my stomach. Ask my mom.” She also assured Keyan that Kevin and I spoke with many doctors and learned all that we could about his bladder so that we could choose the type of surgery that has the highest likelihood of being successful.

Lastly, we talked about why his bladder is not like everyone else's, how there are other children born with bladder exstrophy (Keyan is always shocked that others are like him), and how everyone in the world is made up differently. We had a very good session and will continue to support and comfort Keyan and answer any questions that he may have.

Let the Surgery Begin!

We left home at 5:00 a.m. and arrived at Children's Hospital in Wisconsin a bit after 7:00 a.m. After a meeting with Dr. Mitchell, his nurse, and the anesthesiologist and after a long wait, Kevin and Keyan and the doctors went to the operating room. As you can see, Keyan looks pretty relaxed and Kevin looks very handsome in his hat! Keyan had three requests: (1) that they place the IV after he is asleep, (2) that Kevin go into the operating room with him, and (3) that he hold the gas mask himself. All three requests were honored, which gave Keyan some control, so he was happy. Dr. Mitchell has a plan of what he will be doing, but as he told us before, things may change once he opens Keyan up. His nurse will be calling us every two hours or so to update us and let us know if there is any change to the plan. The surgery should be done at about 5:00 p.m. I will keep the blog updated throughout the day. Thanks for everyone’s prayers.

Keyan Pre-Surgery

 

Keyan and Dr. Mitchell

Waiting and Waiting and More Waiting

We have been getting updates on Keyan about every 1-1/2 hours. He has been in surgery for close to six hours now. They have reported that he is stable but has a lot of scar tissue which is slowing things down. We expect that the surgery will take another few hours.

Keyan's surgery is finished (11 hours!) and he is in recovery...more tomorrow.

A Long Night

After a very long and complicated surgery, Keyan made it to the recovery room and then to our room. He of course had a lot of pain, and his oxygen level was low, so they gave him oxygen and pain medication. He was up a good part of the night with an upset stomach...which was relieved with a huge vomit. He is sleeping now and seems more comfortable.

Keyan slowly recovers

During the surgery, they removed his damaged bladder and created a new bladder from a piece of his bowel. Because of previous surgeries done in China, he had a tremendous amount of scar tissue which made the process more challenging. They also created a stoma which connects the bladder to the belly button. He will now be able to use a catheter through the stoma to drain his urine!

To find additional posts, please go to http://keyansurgery.blogspot.com.