Where has the time gone?

Our bags are packed, our flights are booked, we are healthy (crossing my fingers), we have prayed, we have fasted, Seth is half way to Texas and the Fontan is in 3 days. We have been waiting for this moment since the day he was born. We have prayed about this moment since his last surgery on December 29, 2011. I think Stockton is ready, we are ready and I think God knows that he is ready. How is my boy 4 years old?

The anxiety has been a constant in my life this summer. We have battled a lot of things to make it this far. I am so grateful that my work allowed me to take this time off work and how everyone in our lives has surrounded us with letters, gifts, prayers and kind words. We couldn't have made it the last four years without so many people.

I just put Merrick to sleep for the last time until we get back. We sang the song, Tomorrow, like we do every night. I cried as I rocked him to sleep because I don't know how long it will be until I can do that again. We can't do anything that is outside of the home so I played Sega with Tylee, we made bracelets, ate Oreo cake and washed her hair. The kids bags are packed with diapers, wipes, toothbrushes and clothes for about 10 days. I also packed Tylee's new school clothes as we are not going to be able to be here for her first day of second grade. In her prayers last night she begged Heavenly Father to make sure we are home on her first day of school. It broke my heart. I am going to miss so many things with them in the next couple weeks but they know their brother needs me so much more. The struggle is real when you have a sibling with a health concern. These two kids are great companions for Stockton. Tylee has a sincere heart and comforts him in times of need. Merrick is the perfect playmate. (As I sit here Tylee came and gave me a Starburst. I gave this to her earlier because she was being so good. I asked her why she gave it back and she said that she wants me to have it because she loves me.)

We are trying to make Stockton feel at home in the hospital and so much of his room is packed. It feels empty. I want him to come home. I want him to come back and sleep in his Spiderman bed. I want to wake up each morning with train tracks all over the floor because he likes to build them over and over. I want to hear him singing Christmas songs is the basement when he finds old decor. I want to see Merrick wrestling Stockton in front of our tv. I want him to come home. I want him to come home fast. I want him here.

My heart is filled with gratitude. My heart is filled with peace. My heart hurts for him because he doesn't know the extent of what is going to happen on Friday. I have done everything to prepare him. I have done everything I could do to prepare myself and my family. I can't believe that we have come so far. I can't believe that yesterday, August 3rd, was his first open heart surgery in 2011. We are forever grateful to have Stockton in our lives. He is bold, he is strong and he is a fighter. We love him and we hope to return back to Utah very soon.

Fundraiser

In the last few months we have taken quite a hit financially with all of Stockton's procedures with flights, eating out, hotels, rental cars and time off work. My family is very aware of how much we sacrifice so that Stockton can have the best care. My wonderful Mom set up a fundraiser booth in American Fork and sold cotton candy, #superstockton bracelets, cookies, candy and 200 cupcakes. She was surprised at the generosity in our community and we are so so grateful for the money that was donated. All of my siblings played a big role in helping her. Thanks to Les Schwab for allowing my Mom to use your parking lot. We are forever grateful to the kind strangers that made this upcoming surgery a little more bareable.

July 30th, 2015--Stockton's 4th

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Pre-Fontan Cath

We arrived in Houston late Tuesday night. Stockton was finally able to come down here and get this done. We arrived at TCH at 7am. Stockton was not able to eat after midnight. We were fortunate that we had an early cath time. We met with our anesthesiologist, David Vener, he prepped us for what he would expect and told us that he thought everything would run really smoothly. After that we met with our cardiology doctor, Aimee Liou. She would be the one performing the cath. She told us that she also expected things to run smoothly and explained to us that she would get a good look at Stockton's heart and she could see if there were any collateral veins. (If your heart isn't getting sufficient circulation or adequate oxygen it can begin to create little veins that help circulate the blood flood to certain areas. However, in a lot of cases these vessels can be a problem.) If Stockton has any of these then she will evaluate closing them off or not. A few moments later they gave Stockton some medicine to help relax him. He was acting really silly. We sent Stockton back about 9am. Seth and I were exhausted so we went down to floor 17 and laid on the chairs. We both fell asleep and before we knew it our pager was going off. The procedure was about 3 hours. We spoke with Dr. Liou and everything looks good. She told us that his body didn't create any collaterals. She did say that his pulmonary artery looked a little stenotic but that our surgeon, Dr. McKenzie would be the one to evaluate that. We had to stay by Stockton's bed for 6 hours. He was really sleepy but he was doing really well. When Stockton goes through these things he acts so big. He tried to drink but began throwing up. He threw up about 3 times before we ordered some Zofran. He improved greatly. He was so hungry. We left TCH about 5pm and we had so much relief.

The next day we met with Dr. McKenzie. He was very polite like he always is and was very engaged in our conversation. He said that he doesn't think he is going to touch Stockton's pulmonary artery. He also said that Stockton is getting really big and is a perfect candidate for the Fontan. We love Dr. McKenzie. He has been there since the beginning and we are clued to him. Dr. McKenzie has battle leukemia 2 or 3 times. We are grateful that he keeps coming back to work and we are so grateful for his knowledge. We owe Stockton to him. We left the appointment after having an hour long conversation. We are scheduled on August 7th, 2015 for the Fontan.

Grain of salt

My last post a few weeks ago was about our rescheduled cath. Well, we had to reschedule again! We canceled Stockton's cath because he had caught a cough which followed with some nasal drainage. We felt much better about canceling this time. (Gut instinct, I guess) So now here we are awaiting our new cath date, June 24th. As I write this I am concerned that he may have a UTI and just barely he complained about his ear hurting. Go figure. I am just going to take him to see his doctor tomorrow to make sure that he has no bugs. This poor kid is "healthy" most of the time. I have come to terms with being disappointed but yet I need to take it with a grain of salt.

Love them!

People often wonder what a day with Stockton is like. For some reason they think that because he has a heart condition that we don't do "normal" things. That is totally wrong. We get a lot of looks when we go to the public pool or to a water park because of his scars. I buy him a swim shirt but sometimes it makes him too cold. We are very fortunate with Stockton's case. He survived through the pregnancy, he survived through his first and second open heart surgery and he has surpassed the expectations that I had for him. Stockton lives a normal life and a lot of other children aren't as fortunate. I can't tell you how grateful I am that Stockton is somewhat healthy. He can communicate, like any other kid his age, he can feed himself, he plays with friends, he can can walk, he can swim, he can attend preschool, he can dress himself, he is a potty champ and many other things. We may have to be careful about how long he runs but we are so grateful for all of these other things that we weren't sure about 4 years ago. There are things that are different about him of course, he takes medication every day (only Aspirin, a miracle in itself), he takes naps mid day, he can't run as long, he gets hot & cold very easily, he has scars on his body and he goes to the doctor, a lot! We are grateful to have him in our lives.

When you meet Stockton, when you see the joy in his eyes, when you feel his strength and when you see his determination it truly is amazing. Stockton is going to do something great with his life, I can feel it. (He has already done so much already!) Tylee and Merrick are amazing, little human beings and they bring such joy into our lives. We have so much to be grateful for and I have a hard time dwelling on what we don't. It hurts me to see Stockton struggle and there is a lot of guilt. This will never go away, I've tried. We continue to learn from all of our children but we have so much to be grateful for. Our children are thriving, they fill our home with joy, they make me a better person, they are alive and I am blessed beyond words.

Merrick has the best smile.

Swimming in Arizona

Introduced the kids to DuckTales.

Summer Ice Cream

"Mom, I'm not tired. I don't want to take a nap." -Stockton

The DATE!

After Stockton's cath was canceled last month due to numerous illnesses he is rescheduled for June 1st. I pray that he will be healthy enough to get this procedure. We know God works in mysterious ways and every time we are thrown a curve ball we come out on top. I am sick to my stomach because we just got Stockton's third open heart surgery scheduled. The date is August 7th, 2015. To say that we are scared is an understatement. I'm terrified. We know that he needs this next surgery because he is gradually losing energy daily. His spirits are up and he is still as funny as ever. August 7th was his original due date and my parent's wedding anniversary. We have started to teach him how to calm down and find things that give him comfort. We know there are a lot of needle sticks, x-rays and procedures in his future and we are looking for ways to help him be calm. (Any suggestions would be helpful.) We are thrilled to have it finally scheduled and we hope that he is healthy enough. Thanks for thinking of him and our family. This road we are on is exhausting but filled with more happiness and joy than you will ever know.

Pre Fontan Cath

We just got Stockton's cath date.  He is scheduled for April 29th with Dr. Justino who is the head of the cath lab at Texas Children's. This will require us to be admitted a couple days then hopefully we can return home if there isn't any serious interventions. From this procedure we will get a good idea about the pressures and function of his heart. His oxygen remains in the low-mid 80's. We will be scheduled for his next open heart surgery after this cath. Let the anxiety begin...

(Stockton and his little brother, Merrick)