Wednesday, October 19, 2011

Growing Up!

It was a BIG day for us today, as it was Trevor's FIRST day of PRESCHOOL!!  It has been nerve-wracking leading up to this day.  I know when you send your child off to school for the first time, it's not easy, especially when they haven't attended daycare.  But when your child has a medical condition, it's even harder, as there are so many more things to worry about.  All of these scary thoughts go through my head... what if he gets hurt, if he was having any heart issues would the teacher know, is he going to be treated differently because of his scars, is he going to have any delays with learning, is he going to stop and rest if he gets tired.  So many things to think and worry about.  I'm so excited for him to be like other kids, but then... I am terrified!  I know he won't have any problems making new friends though, as he is very social, and loves talking with people.  I just wish I could keep him at home forever & ever, and hold on tight to him.  I know, it's probably just me... stressing out, being an overly protective mom, but that's my right as a mom.  I'm just not ready for him to grow up!!

So this is how the day went.  This morning, Trevor woke up bright and earlier, ready to go to school for the first time.  After getting his backpack ready, we were off.  Soon as we walked into the classroom he headed right off to the play area to introduce himself to all of his new friends.  No problems fitting right in.  Mom here still a bit nervous, so I stayed and helped out in the classroom for a while.  He ended up having a blast, but at the end of three hours, he was ready to go home to relax.  He talked all day about his new friends and can't wait to go back again on Friday.  One more big step taken, making our lives even more normal! 

I can't believe that just five months ago Trevor was going in for his third open heart surgery, and now he has started preschool at the elementary school he will be attending next year for Kindergarten.  Life is becoming so normal!  Yes, we still have to go in for blood draws every few weeks to check on his coumadin levels (blood thinner meds).  But on a good note, his last day for coumadin is one month away - yeah!  Being on the coumadin really stresses me out with the risks that are involved with falls and head injuries.  The Cardiologist will continue to monitor his enlarged liver, as liver complications and other heart issues can develop after the Fontan surgery.  (  As for the extra spleen that is hanging around in his body, nothing to worry about... just an extra body part his doctor said :)  He has his ongoing Cardiology appts, even though his next one won't be until February next year.  Yep, next year!  At his last appointment, his saturation levels are at 96% and there is even a chance that it can get to 100%.  Wow, 96% is Awesome!  Even better than this, the cardiologist said Trevor does not have any restrictions right now.  Nope, NO RESTRICTIONS!  So you know what that means... time to sign him up for soccer.  He's got a great left foot!  And this winter we will have to get him out on the slopes to learn to ski.  He will have to learn in time what his heart can handle and when it's too much and time to take a break.  He will have to learn to set his own limits.  The way the cardiologist put it, Trevor is in the honeymoon period.  Honeymoon Period???  Basically the next few years his heart will be great and he will have lots of energy, but as he nears his teen years, then the rhythm issues start and we will start seeing the differences of his half of working heart to kids with a normal heart.  He will have a more difficult time keeping up and will tire out easier.  And there can be the other possible complications that can develop after the Fontan surgery.  Not the best of news.  So we can either worry about what his future holds or live in the now enjoying the honeymoon. We are all for the honeymoon period and giving Trevor every opportunity in life to be like other kids. We will just take it one day at a time, starting with preschool!

First Day of Preschool!

Just some other photos we've taken over the last couple of months that I'd like to share.

Hanging out with Grandma & Grandpa at Seaport Village

Oh yea... no more low fat diet, so we had to take him out for a burger!

Homecoming Night for Travis

Shamu & You Family Walk!

My Heart Hero!

Spending the Day at Bates Nut Farm

Wednesday, June 29, 2011

Trevor is Back!

I'm a bit overdue in giving an update, as this journey can be physically and emotionally draining. Since we've been home I just needed some time to relax and hang out with the family. I can't believe it was six weeks ago that Trevor had his third open heart surgery. Even more, I still can't believe he was out of the Critical Intensive Care Unit in one day and home ten days later. He's my fighter! My little guy is so amazing and strong! I hold him close every day, so blessed to have him in our lives.

When we first came home from the hospital we were busy going for appointments to the Surgeon office, Cardiology, and to the lab for blood draws, learning his new medication routine, shopping for fat free & non-fat foods for his minimal fat diet (no more than 20 grams per day), and changing habits, like not lifting him up under the arms for at least six weeks. Each day we were trying to get him outside more and to be more active, to help keep fluids from collecing in his chest (pleural effusions), the very thing that gave him his rocky start right after the surgery. We didn't have to worry about his eating once we were home, as he was constantly hungry, eating every hour to hour an half. Within the first two weeks he had already gained back his lost weight, weighing in at 30 lbs. 10 ozs. A huge accomplishment for Trevor after our years of struggling with his weight gain!

With every appointment, things continue to improve. Praying this trend continues!! We have cut down on the meds, he first came home with 8 different meds, some two to three times a day. Now he is down to 3 meds. At his last couple of Cardiology appointments, awesome news again... xrays look great! Trevor was so excited at his last appointment when his Cardiologist told him we could add in small amounts of chicken to his diet. As soon as we arrived home, chicken was on the table. The couple of ounces of chicken didn't last long as he gobbled it right down, not even giving me a chance to grab my camera to take a picture of his huge smile as he was eating. That was his big news of the day and he had to let everyone know that he could eat chicken again. At his last weekly blood draw, to check on his Coumadin levels for his blood thinner, again great news... his INR levels were Perfect!  It was great to hear that we didn't have to come in for another blood draw for three weeks. Yippee!

Six weeks later... I can now say that Trevor is back to his happy, energetic self!!

Can you believe this video was taken three weeks after open heart surgery?!

Here are some favorite pictures over the last few weeks...

Travis & Trevor walking along Lake Poway

The boys feeding the ducks & geese.

Enjoying the day at the San Diego Fair.

Hanging out at Sea World.

I wanted to share a few things that really touched our hearts during this last surgery. First off, I want to say that I am so grateful & amazed of the outpouring of support, prayers, and love that has been sent Trevor's way, from family, friends, and the heart community. Thank you all from the bottom of our hearts!!
  • We had amazing friends that organized & gave blood donations that were needed for Trevor's surgery. Thank you for saving a life!
  • We had many visitors stop by during his hospital stay, but there was one very special visitor. An adult congenital heart survivor, also with a single ventricle heart, stopped in and visited with us for a couple of hours. She shared her life experiences, feelings, and gave us advice that we were grateful to receive. Thank you for the visit, it meant the world to us!
  • This comment made me such a proud momma that I wanted to share....One of the nurses told me that our son was amazing and if she ever had a child, she hoped he would be just like Trevor. Also, all the nurses commented on how easy going he was. My little heart warrior!
  • A huge 'THANK YOU' to Jenny Lincoln (& her heart warrior Aly Jean) for having the kids at the Central Michigan Congenital Heart Walk make get well cards for heart kiddos undergoing surgery. It put tears in my eyes reading the cards from kids who didn't even know Trevor, but were sending him get well wishes.

  • Thank you for the special get well gifts from his heart warrior friends Colin, Grace, Lindsay & Hailey!

  • Making his hospital stay a little more comfortable, Heartfelt Couture made this awesome gown for Trevor. Thank you!

Trevor has been through so much in his short life, more than most of us will ever go through in our lifetime. I'm amazed when I look at him every day, full of energy and a happiness for life, playing like any other four year old. But knowing that there are no guarantees with his little heart, it saddens me to think that our little boy may not out live his mommy & daddy. I wonder at times where the strength comes from to get through these hard times, but I believe, as it is said, God will not give you more than you can handle. I will never give up hope and will fight along side him for the rest of his life. Along our journey we have met some amazing families with heart kids that are fighting the fight and ones that fought to the very end. These little heart angels & families will always have a special place in our hearts. I pray that one day there will be a cure for all the special heart kiddos and adults, as Congenital Heart Defect Awareness continues to spread. It's encouraging to know that with medical advancements, it has led to significant improvemnents in the life expectancy of single ventricle kids and they are now surviving into adulthood, reaching their 30's and 40's. 

1 in 100 babies are born with a CHD! Give HOPE, Spread AWARENESS!

Friday, May 27, 2011

This Says It All...


This afternoon Trevor was discharged from the hospital!! 

Ten days after his Fontan Surgery...we are home!!! 


Two Thumbs Up!

Bye, Bye Hospital!

 I'm Home!

Our Heart Warrior is HOME!

Wednesday, May 25, 2011

Day 9...Post-Fontan!

Yeah! Yippee! Yahoo! 

A week ago yesterday, on May 17th, our little heart hero Trevor underwent his third open heart surgery for his complex single ventricle. The day we had been dreading for years, even though it was the day we wanted to get here asap. We just wanted to get this third and hopefully last surgery over with.

It's a huge relief to be going down recovery road. One day in the Critical Intensive Care Unit and then moved to Intermediate Care... Amazing! For the most part the recovery has gone well, except for the concerns of the excess fluids in his chest becoming chylous effusions (chylothorax). But with the quick action of the doctors we are hoping they have his chest fluids under control so it will no longer be an issue.

Yesterday his last chest tube was removed, along with the pacing wires. He still has the IV in his hand for fluids, heparin, and other meds and the wires for the monitoring of his heart rate and O2 sats. I still can't believe this...O2 Sats at 98! Before his surgery his O2 average was 85. Wow!! I would of been happy with the low 90's. They also started him on coumadin which will take a few days to get leveled out.

Trevor was such a happy camper today when the doctors came by to say he could start taking clear fluids by mouth again. They said his xrays looked better today than in his pre-op xray. He had the biggest smile on his face when the gatorade arrived at his room. The last few days have been difficult since we could only give him ice chips by mouth every 2-3 hours, along with his IV. We tried keeping him distracted with movies, games, and taking short walks to the playroom. We were starting to see the grumpy side of him with not getting many calories. I think any of us would be grumpy too if we couldn't eat for a few days. With losing a few pounds (@3.5 lbs) his energy levels were going down. Poor thing... every time the food service walked by, he would comment that someone was getting food, but not him :(

What a big change a little gatorade can do. He had more energy to go for walks around the pod and visits to the playroom today. The smallest improvements in his recovery gives us all the greatest feeling. It just leads us one step closer to getting home! Home Sweet Home! Not getting my hopes up yet that we are almost there, as things can change from day to day.

After having limited clear liquids for 24 hours, if all looks well in his xrays tomorow, he can start on a minimal fat diet. He will continue on this diet once he is discharged for approximately 3-6 months to restrict the fat intake that can cause the fluid issues. Praying that everything looks great tomorrow!

Our Adventures in the Hospital...

Feeling Great after taking a bath!

Hanging out in the Playroom!

Trevor had a visitor in the Playroom today!

SO HAPPY for the clear liquids!

Taking a rest during walk time!

Couple of Awesome Pictures taken by big brother Brandon.

More updates to come soon! 
 I will also be sharing some of the love & support
Trevor has been receiving during his journey.