Life is Good!

Thank you to everyone who followed Keyan's BLOG and many thanks for all of your thoughts and prayers. Keyan has healed wonderfully well and is running around like he should be. This summer has been filled with swimming (something that Keyan was not able to do), bike riding and lots of fun. We cannot thank Dr. Mitchell and all of the staff at Wisconsin Children's Hospital enough.

All is fantastic!

We began Fathers Day with a wonderful breakfast followed by time spent playing together. During this time Keyan was complaining of a stomach ache which worsened as the morning went by. Thinking that it may be a sour stomach from breakfast (yes, I cooked) I gave him some gas-ex and Tylenol for the pain. Within an hour Keyan was screaming in pain and began to vomit. This lasted for about 1 1/2 hours. We called the urologist on call and he told us to take Keyan to the emergency room in Milwaukee. After 6 hours and numerous tests they found that Keyan was full of stool. They admitted and monitored him overnight. After passing much stool we were discharged, Keyan was feeling much better. We are very happy that stool was the only problem and that this situation was not more serious. Another day.

Keyan is TUBE-FREE!

We had our usual Tuesday appointment with Dr. Mitchell and he is really happy with Keyan's progress. We have stretched Keyan's bladder to about 250ml and have to catheterize every 3 hours. Dr. Mitchell removed Keyan's last remaining drain so now Keyan is officially tube-free! After the appointment we had a tube-free celebration! Keyan can now swim, ride his bike and do just about everything that he wants. We must be diligent about draining his urine every 2 1/2-3 hours so that we will not harm his new bladder. Keyan is doing a fantastic job at catheterizing but needs reminders on his timing. As always, thanks for every ones thoughts and prayers.

Keyan is Cathing!

We had our appointment with Dr. Mitchell on Tuesday and was told that Keyan is healing beautifully. He removed the AVC drain which is the drain that came from his belly button. He now us using that channel to drain his urine. He takes a 16 inch, 10 french catheter and carefully guides it through the channel beginning at his belly button down into his bladder. Once the catheter reaches the bladder the urine drains out. Keyan is doing such a remarkable job at self catheterizing and we are so proud of him. Once we are all feeling confident with cathing, irrigating (flushing saline in and out of the bladder through the catheter to remove the mucus) and once the bladder stretches a bit more, the other drain will be removed. To stretch the bladder we will drain the bladder every 2 1/2 hours rather than the original 2 hours. Our goal is to be able to go 3-4 hours between draining the bladder.
One word of advice, pre-order all supplies, do not wait until you must begin cathing. We were given enough supplies to last us for a day and a prescription for additional supplies. Unfortunately it takes 5-7 days to recieve the order...........after hours of phone calls I was able to track down 31 catheters! Today I found some more that will last us until the shipment arrives. A lesson to be learned.

Keyan is feeling much better!

A quick update, Keyan is feeling much better, it seems that the antibiotics are working! He is counting the days until Tuesday to get one drain out!

Today was going to be a good day....

Today was going to be a good day, it was Keyan's first day back at school. About mid-day the school nurse called and said that Keyan had pain. I immediately picked him up and watched the pain get progressively worse. After a call to Dr. Mitchell and being seen by our pediatrician we learned that Keyan has a kidney infection. We will try and kick it with oral antibiotics but if that doesn't work we will got to the hospital for IV antibiotics. Once again, lets all say a prayer.

We had our appointment with Dr. Mitchell today and received some good news. It seems that the lump was a fluid build up and happens sometimes with this type of surgery, fortunately it is resolving. We also learned that one of the drains will be removed next Tuesday! This means that Keyan will be able to start cathing independently. The catheter will go into the stoma at the belly button and to the bladder to drain the urine. Keyan is very excited to loose a drain and become more independent. He is also permitted to return to school part time................we are all overjoyed with the news. Thanks for every ones prayers, they are being answered.

I haven't posted in some time because Keyan has been doing so well and we have been so busy. We have all learned how to care for his drains and incisions and feel comfortable with it.
Unfortunately last night Keyan began having pain and discharge from his a part of his incision along with a lump the size of a large grape in the same area. He also began leaking urine from his stoma. Of course we were extreamly concerned and we contacted he doctor on call. This is when the frustration began, the doctor on call does not know Keyan or his case, so he is making recommendations acording to only our report. He said that the leaking of urine can happen and not to worry. He thinks that the lump can be a blood clot or a pocket of liquid and not to worry. The drainage may be the begining of an infection but because Keyan does not have a high fever or intense pain, we should wait until Tuesday to see our Urologist. If Keyan's symptoms worsen we will take him to the ER, if not, we will wait for Tuesday to arrive so we can see his doctor. Always a worry. I will keep you posted.

We are home!

We are home! Keyan and I are so very happy to be home, to sleep in our own bed, to take a real shower and to see our wonderful family. Keyan had a good day today, he is playing a lot of video games and board games. He is feeling minimum pain and his drains are working well. The night time is difficult because we are up so much draining and flushing. We will need to get into a routine to make this work so that we all get enough sleep. As you can see, Keyan is very happy to be home.

WE ARE GOING HOME!!

Just like that, we are going home. Keyan is tolerating everything really well thank goodness, so we packed our bags and we will be discharged at about 3:30pm. There will quite a bit of follow up care at home and back at the hospital so I will be continuing with the BLOG with occasional posts. Thanks to everyone for everything, we couldn't have done this without you.
XO

One week ago today....

One week ago today Keyan had his surgery. It is just amazing all of the ups and downs he experienced, seeing him sitting next to me now like nothing happened. Kids are so resilient.
Today is bladder day. We will find out if his new bladder is functioning as it should. One of the drains from his bladder has been clamped and we will be clamping the other one so that the urine stays in the bladder rather than flowing freely out into a bag. We will have to open the clamp every hour to drain the urine 4X and then open the clamp every two hours and see how he responds. If Keyan does well with this and tolerates a regular diet he may go home tonight. Once your feeling better the hospital is anxious to discharge you. I need to be certain that I am comfortable with everything that we need to do to care for Keyan's needs at home.

Keyan just ate the worlds best cracker!

Dr. Mitchell gave Keyan the ok to have two saltiness crackers and they were the best crackers that he has ever tasted! He ate them very slowly and savored every bite. Keyan also had a cup of hot chocolate, a bowl of ice-cream and 3 cups of Gatoraid.....he is a very happy boy.

We also had a surprise visitor today, Harley the therapy dog, he sat with Keyan for a while and Keyan loved it!



They are starting to talk with us about going home. We will have to see how tomorrow goes. We can't wait to get home!

Today is a great day!!

Keyan had a fantastic night!! He was doing so well that they are allowing him to have a liquid diet, his first meal, tomato soup. As you can see, he is very happy! The next step is to see if he can tolerate the liquid diet, and if so, they will move him to a semi solid diet and then to a regular diet. Once he is eating and pooping he will be able to go home! He will be going home with two drains from the bladder which will have to be cared for for about three weeks. I am being trained on how to drain and flush them. keyan's incision is also healing well, he has a scar that is about one foot long from his groin up the belly. He wants to know how many stitches he has, we will have to ask Dr. Mitchell. (he asked, over 100 stitches)
Keyan also went to school today,(Fairview would be proud) they have a classroom set up in the hospital with two teachers. Keyan read and painted a bird house, it was a nice change for him....and I was able to take a nap!
we will keep everyone posted.

Let the poop begin!

Last night (Sunday night) around 9:00pm Keyan pooped..... And the he pooped at 10:30, and at 12:00, 2:00, 3:00....you get the picture. This is really exciting because it means that Keyans bowels are starting to work, no obstruction! Keyan is feeling well enough to talk a bit and he is moving around better. If this progress continues they will pull the NG tube and maybe the epidural. It will be good for Keyan to have less tubes and wires. We counted them and found that he has 14 tubes and wires attached to him...crazy.
UPDATE
One of Keyan's doctors came in expressed concerns about a possible hernia so we had to have an x-Ray and ultrasound done along with some blood work to check his levels. They also talked to us about placing a PIC line to feed him nutrition. All of these happenings made us both upset. Soon after, we spoke with Dr. Mitchell, our surgeon, and he let us know that Keyan does not have a hernia and that the NG tube can come out.....within 5 minutes, the tube was out and Keyan was very very happy!!! We will be slowly introducing water to see if Keyan can tolerate it. The epidural was also pulled, yahoo!


Let' s hope that this is the start of something good and that Keyan continues to improve and heal.

Ng Tube

Keyan had a very rough night, he had extreme belly pain and vomiting. Because this is persisting to this extent they had to place an NG tube. This tube goes through the nose to the stomach and acts like a suction that suctions the contents and the gas of the stomach out. Keyan is very upset about the NG tube and his overall mood is very low. He wants to feel better but he just keeps getting worse.
The doctor came in and talked to us about the possibility of an obstruction in his bowel. They turned off his epidural to see how his body responds, if the pain gets worse and his stomach remains distended the may consider another surgery.
The kids and Kevin came to visit but Keyan was not really up to the visit. Like I said, Keyan's mood is very low, he is upset, angry and in pain. Let's all say a prayer for him.

Another step, in which direction...I don't know

Keyan certainly had a tough start to his day with vomiting and stomach pain.
Many doctors and medicines later he was able to walk which helps his bowels and gas. He picked up a bit when Mrs. Marten and Mrs. Thompson visited. Keyan was so happy with the many beautiful cards that his classmates made for him, thank you everyone!!! And many thanks for the wonderful books, cookies, gifts and especially for your thoughts and prayers.

One step forward, two steps back

Last night was a tough one, Keyan was up all night. Due to the type of surgery and it's length, Keyan has a tremendous amount of built up gas. He is unable to pass it because his bowels are not working yet and the pain is unbearable. They are going to give him a suppository and hopefully that will do the trick, if not, they will have to place a tube in his nose to his stomach to expel the gas.

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!