A good day!

Today was an eventful day for Keyan! After a rough morning, the doctors ordered additional pain medicine and anti nausea medicine which helped a lot. A few hours later they got Keyan up and he walked to the bathroom for a sponge bath and then he sat up in a chair for an hour! I am so proud of how hard Keyan is working. Later in the day the family visited and the best news of the day.....Keyan was able to have an ice pop! It was a good day.

Day three.

Today we are three days into this journey, day one was surgery and day two and three recovering. This morning Keyan is feeling more pain, we will be contacting the pain management team to get him some relief. He has an epidural which helps but is not enough. The most difficult issue for him has been not being able to eat. He is hungry, and this is a too familiar feeling for him which brings back thoughts of difficult times in his past. He told me that the hunger is worse than the pain of the surgery. I feel so sad for him. During the surgery they removed a portion of his bowel and now it is important that the bowel rest and heal. Hopefully in a couple of days...... Keyan is able to have ice chips but because he has thrown up so often, they are limiting them. Today they want to get Keyan up and sitting in a chair, yesterday he stood up for a minute or so. Keyan said that he would rather not.....we will see.



Ellie, Benjamin, Quin, Blaine, Ava, Kevin and Grandma Penny will be visiting today. Keyan is happy about this and is wondering if they are going to bring him food:(. Kevin and I were both able to be with Keyan the first two days because Grandma Penny came to stay with the kids until Sunday, we are very thankful for her help. Thanks to everyone for all of your thoughts and prayers, I will keep you posted.

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 ache...which was relieved with a huge vomit. He is sleeping now and seems more comfortable.


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!

Keyan's surgery is finished and he is in recovery...more tomorow

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.

Let the surgery begin!

We left home at 5:00am and arrived at The Children's Hospital in Wisconsin a bit after 7:00am. After 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, one, that they place the IV after he is asleep, two, that Kevin go into the operating room with him and three, that he hold the gas mask himself.....all three requests were honored which gave Keyan some control, 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 5:00pm. I will keep the BLOG updated throughout the day. Thanks for everyones prayers.

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 anxiety about the surgery itself, what his friends may think about his surgery and if 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 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 that everyone in the world is made up differently. We had a very good session and will continue to support, comfort and answer any questions that Keyan may have.

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!

My doctors!

Dr. Micheal 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.

We will be keeping this BLOG to update our friends and family during Keyan's surgery and recovery. Equally 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 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!