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.  

Sunday, May 22, 2011


This is the day we have been waiting for (well, one of the days)... our little trooper has smiles again!! I thought the best way to start out this post is by sharing his precious smile.


We are getting some smiles even though we continue to battle with his pleural effusions (excess fluid that surrounds the lungs). After going back on an IV for a day, his levels were in the negative, but as soon as we started taking some fluids by mouth again, the output of fluids in the chest tube increased substantially. During the doctor rounds this morning it was decided that he would go back on the IV with nothing by mouth, except for ice chips every 2-3 hours. Xrays and levels will be reviewed once again in the morning. Right now he has one chest tube, pacing wires, and an IV in his hand. There are also discussions around the IV in his hand as this can stop working at any time. With blood draws for his potassium levels (which were low) and eventually to check his coumadin levels once he starts taking after his chest tube is removed, the doctors discussed options, one being putting a picc line in his arm. 

We continue making small progress every day. So we have had some minor bumps in the road, but the most important thing... his heart functions look great! 

Another big step in his recovery today was our walk around the pod and to the playroom!! It was only baby steps but we will continue working at it every day.

Our Heart Warrior!!

Thank you for the continued prayers, love, and support!

Friday, May 20, 2011

Two Steps Forward, One Step Back

One of the important things that I learned from the nurses when Trevor was in the NICU, as a baby, was to expect good days and bad days. They said not to get discouraged when he takes two steps forward and then one step back, as it will happen.

Ok... we had that step back. Progression has slowed down and we are taking baby steps now. Trevor started having issues keeping fluids down. That was when the sign went up on his door "NPO" (Nothing By Mouth). Yesterday afternoon the doctors put him back on an IV to give his stomach a break and to give him some meds that would help with the stomach irritation. Later in the evening we were told that we could give him small amounts of ice chips as long as his stomach would tolerate it. So far so good, as we have moved on to water & gatorade.

Yesterday morning it was also mentioned that his chest tube would probably come out later, but that plan changed throughout the day as the output volume from his chest increased. Going from an average of about 15-20 mls every 4 hours to 50-60 mls. The xrays showed that he had fluid inside and outside the right lung (pleural effusions). So we've had to cut down on his fluid intake (by IV and mouth).

Today Trevor is feeling a bit better. He isn't sleeping around the clock as he has been doing the last couple of days. The doctors are monitoring his fluid intake, chest fluid output and blood labs, to make sure he stays on track.

Hoping that Trevor can continue taking fluids by mouth and that his chest fluids decrease so we can get the chest tube out soon. Once he can have his femoral line removed from his leg than we can go for wagon rides and hang out in the playroom. I can't wait to see my little munchkin running around again!

Trevor is finally sitting up in the chair again.

Wednesday, May 18, 2011

1 Day Post-Fontan!

I've been waiting for this day to come to finally being able to say Post-Fontan! It is such a great feeling to have this 3rd planned open heart surgery over with. Wow... 1 DAY POST-FONTAN!!!!

Our day started out early yesterday arriving at the hospital at 5:00am. Grammie and Papa hung out with us until we headed back for the surgery prep. Then around 7:00am we were told it was time to go. A very emotional time for mommy and daddy, as we watched our little boy walk away with the nurse, praying that he would make it through the surgery. We just want to hold our baby boy again...please keep him safe. We were very hopeful though as we knew he was in good hands. (Later we were told that when they took him back to get him ready he sat their happily watching everyone working around him and he was so easy going. That is our little trooper!)

The next few hours we hung out at the Ronald McDonald House... just waiting for the phone call. That phone call came at 11:30am. He was out of surgery, everything went great, and they were in the process of taking him off the heart lung bypass machine, and we could see him in about an hour. Tears of joy!! In speaking with the heart surgeon, he was happy with the surgery and he said it was over quicker than they had planned for it.

It hurts so much seeing our baby boy like this. Walking into the room the first time after heart surgery, with a room full of equipment, our baby boy connected to lines and wires going in every direction, and breathing on a ventilator, is beyond words that I can't explain. It is so heartbreaking!

But our heart kiddos are fighters!! Within hours he was off the ventilator, breathing on his own and as the day progressed more and more equipment left the room.

The day after surgery.... we are now on the road to recovery!! YEAH, we have some pink toes, finger nails, and lips! (as they used to be bluish). In the last couple of hours a chest tube and a line in his chest & leg were taken out. He is on tylenol around the clock, with morphine as needed and they started him on heparin (blood thinner). Hopefully tomorrow when he starts waking up more we will start getting him to move. I know that first step isn't going to be an easy one.

Check out his progress below...

Getting ready for Surgery.

Our Heart Hero just returned from heart surgery! It hurts so much seeing our little boy like this :o(

Wow...A couple of hours later and we are already making progress.

His numbers are looking great!

On the road to recovery!  1 Day Post-Fontan!!

 Mommy & Daddy are so proud of their little warrior!!  He is so brave and strong!!

He is on the move...from bed to chair.

It's graduation time....we are moving from Critical Intensive Care to the Intermediate Care Unit tonight!!

Thank you everyone for your prayers, support, and love! Keep the prayers coming that recovery will continue this same way.

To Heart Mommys & Daddys - Stay Strong, As Your HEART HEROES Are Fighters!!