Home Sweet Home To Me!

It is no secret that our family loves the Tennessee Volunteers and that we consider East Tennessee our second home.

At the beginning of September, we were asked if Beads of Courage could use one of Tucker's 4 year pictures in their campaign to encourage people to carry Beads when they compete. Of course we said yes and, after doing a little research, I decided that I would try to get the University of Tennessee to participate in the program.

I had a tremendous amount of luck in this effort and the UT athletic department was very interested in learning more and possibly having some players carry Beads of Courage.

Tennessee Team Beads of Courage

Fast forward to November, where Tucker was invited by Beads of Courage and the Vols football team to attend the last home game of the season as a representative of Beads of Courage. We didn't hesitate to pack our bags and head to Knoxville.

We arrived at Neyland Stadium after lunch on November 23rd for the game against Vanderbilt, the last home game of the year, senior day. We checked out some of the tailgate parties and Tucker danced to the music. About an hour and a half before kickoff, we made our way down to the stadium for the Vol Walk. We waited and watched as the coaches, players, cheerleaders, and band paraded past us ALL of them wearing Beads of Courage. Tucker got to "high-5" some of the players and coaches as they passed.

Tucker at the Vol Walk

After the Vol Walk, we were escorted through the player's tunnel and onto the field for pre-game warmups. We got to hang out on the sidelines while the players got ready for the game. There was music blaring and Tucker had a great time. He had a dance-off with Smokey, the Vols' mascot, and got to meet a few of the players. Michael Palardy, the kicker, came over and talked to Tucker for a few minutes during warmups. He knew Tucker by name and was awesome with him. Michael is definitely a favorite of ours from now on.
       

Tucker & Michael Palardy

Tucker telling Michael his age

We took a ton of pictures and made memories that will last a lifetime, doing something that not many people get to do. After warmups, we made our way to our seats to watch the game. It was a 7pm game and it was cold in Tennessee. By halftime, Tucker was very cold so we decided to watch the rest of the game from the hotel room. He was asleep before we left the parking garage. 

It was an amazing day for Tucker and for us. I don't think there is any doubt that Tucker is a Tennessee fan now and he sings "Rocky Top" almost daily.

The next day we traveled south to Whitwell, TN to see some of Dena's family. It was great to catch up with them and for Tucker to get to see where his Papa grew up.

It was a fast trip that covered a lot of miles, but it was worth every minute of it. We left Texas on Thursday afternoon and were back at home by Monday night.

We are very excited to know that every single Bead that was carried that night will give enCouragement to a child fighting CHD or cancer. Tucker's story helped make it happen and he continues to get to bless others.

Tucker meeting Smokey

Tucker & "The Real" Smokey

We are eternally grateful to Ashely from Beads of Courage and Antone Davis and the University of Tennessee Athletic Department for making it all possible. 

"Rocky Top will always be home sweet home to me!"

~Trent

It’s Just a Heart Cath…

It’s just a heart cath. I can’t tell you how many times I’ve heard that phrase come from the mouth of a heart parent. I can’t tell you how many times my wife and I said it in the months and weeks leading up to my son, Tucker’s (Hypoplastic left heart syndrome, HLHS), heart cath on May 22^nd.

A heart cath, or cardiac catheterization, is a procedure in which doctors insert a catheter and guide wire into a major blood vessel and move them until they reach the heart. Most heart caths originate in the groin and enter the heart through the femoral artery. Once the catheter is in place, the doctor uses a dye and fluoroscopy (real time x-ray showing movement) to get a very accurate picture of the heart and surrounding blood vessels. In kids with congenital heart defects (CHDs), heart caths are typically used as a diagnostic tool prior to surgery or to make smaller repairs. In Tucker’s case, the heart cath was used to make sure everything looked good in his heart prior to having open-heart surgery on June 18^th.

A few days before Tucker’s procedure, I found myself thinking about the phrase, “It’s just a heart cath.” To most parents, it wouldn’t be “just” a heart cath, it would be something big! To most parents of kids with CHDs, it is a fairly minor part of their treatment.

When you compare a heart cath, which usually is a one day affair, with an open-heart surgery, it’s not that big of a deal. But it really all comes down to a matter of perspective. Many CHD parents experience numerous surgical procedures during the course of their child’s treatment. Heart caths usually occur before these surgeries. Most don’t require an overnight stay in the hospital. There are, relatively, few risks involved. Heart caths are just part of the process, like echocardiograms and cardiologist visits.

To a parent of a child with a more “minor” CHD, a heart cath may be the only procedure that they ever have. Some heart holes can be repaired during a cardiac catheterization. To a parent of a heart healthy child, a heart cath would probably be a very big deal. Prior to having Tucker, if you had told me that my child would be put to sleep, taken to a surgical room, have a wire fed through the largest artery in his leg into his heart, and then have to remain completely still for several hours after waking up, I would have freaked out. Now it’s “just a heart cath!”

Perspective is an important thing. Things that are a big deal to one parent might be minor to another. We don’t always know another person’s story or experiences. Tucker’s HLHS is a more severe form of CHD than a simple hole in the heart, but that doesn’t mean that a child with that defect is any less important or significant than Tucker. His or her parents aren’t any less of a CHD parent than Dena and I. Many CHD parents get wrapped up in our world and we sometimes try to compare our lives to the lives of parents dealing with other childhood disorders. We get frustrated because childhood cancer gets more attention and funding than CHD research and prevention. But it’s not a competition. They are both tragic. The kids and the parents from both sides go to hell and back. Lives are lost to both. It’s all about perspective.

Tucker’s heart cath went very well. The doctor said that his heart looked as good as possible for a child with HLHS. The pressures in his heart and blood vessels were in the correct range and he was cleared for surgery. He was a little feisty when waking up from the anesthesia, but he recovered quickly. It wasn’t too hard to keep him still for a couple of hours, all we had to do was put on his favorite movie and give him snacks and drinks.

As we gear up for Tucker’s big surgery, it’s hard not to wish it was just a heart cath! He has survived and thrived after his first two surgeries and there is no reason to think differently about this next one, but it is still tough to prepare ourselves for it. When I start to feel a little overwhelmed about everything, I think about the families wishing for a surgery to fix their child’s problem or the families who are making funeral arrangements. I wonder if they would think, “It’s just a heart surgery!”?

Perspective…

~Trent

Wishes for CHD Kids

Did you know that most CHD kids qualify for the Make-A-Wish program? If you didn’t know that, you are not alone!

Our local support group, Amazing Little Hearts, had a representative from Make-A-Wish at our meeting this past week. He shared about the program and answered all of the parents’ questions. Since not everyone is familiar with the program, I wanted to share what we learned with you. Hopefully, the information below will help you understand Make-A-Wish a little better and answer any questions that you might have.

• Any child between the ages of 2 ½ years and 18 years, that has a life-threatening condition, is eligible for Make-A-Wish. Children must be referred and determined to be medically eligible in order to participate. The final determination for medical eligibility is determined by the child’s treating physician.
• Most complex CHDs qualify as a life-threatening condition. These include, but are not limited to, Hypoplastic Left/Right Heart Syndrome, Double Inlet/Outlet Left/Right Ventricle,Transposition of the Great Arteries, Tetralogy of Fallot, Pulmonary Atresia, etc. If you aren’t sure if your child’s CHD qualifies, consult your pediatric cardiologist.
• Referrals for Make-A-Wish can be made by parents, doctors, nurses, and even social workers. Basically, anyone who has direct knowledge of the child’s condition and has a role in the medical care for the child can refer. MOST referrals are made by the child’s parent, but medical eligibility still must be confirmed by the child’s doctor.
• To refer your child, go to www.wish.org and click on the “Find Your Local Chapter” button on the top, right side of the page. Select your state and then find the office that is closest to your home from the list. Call the number and they will walk you through the referral process. You can also have them send you a referral packet in the mail, but the quickest and easiest way to refer your child is over the phone.
• Some of the information that they will need from you during the referral process is: Personal contact information for parents/guardians, contact information for the child’s treating physician (usually cardiologist for CHD children), general information about the child’s condition or defect, information on any upcoming surgeries or treatments, any physical limitations, handicaps, or special equipment for the child, and an idea of what the child’s wish might be.
• Despite what you might have heard, Make-A-Wish is NOT just for kids who are terminally ill. While children who are terminally ill may receive expedited services from Make-A-Wish, your child does not have to be dying to be able to make a wish. Remember, ANY child with a condition that has or does threaten their life is eligible for a wish. In fact, most children who are granted a wish go on to live happy, full lives.
• Most wishes fall into one of four categories: “I want to be…”, “I want to go…”, “I want to have…”, “I want to meet…”
• The average cost of a wish is $7,500. It is the goal of Make-A-Wish for a child’s wish to cost the family nothing and to have zero impact on the financial situation of the family.
• Make-A-Wish goes to great lengths to ensure that the wish that is granted is actually the wish of the child. They will have trained Wish-Granters meet with the child and ask, “If you could have one wish, what would it be?”

On a personal note, we got some great news last week. Our son Tucker, HLHS, has been accepted into the Make-A-Wish program. We are so excited for him, but also realize that we will be waiting for a little while for him to make his wish. Since Tucker is only 3 and he has his Fontan procedure coming up in June, it may be a couple of years before we meet with the wonderful Wish Granters. We want him to be able to truly pick something special for himself since this is a once in a lifetime experience. We also want him to remember his wish for the rest of his life. We believe that, in order to accomplish these two things, Tucker needs to be at least 5 years old before he makes his wish.

I hope that this information  has been helpful to you. Our CHD children go through so many tough times, they deserve the hope, wonder, and magic that comes with being granted a wish. I hope that you will take the time to refer your child to Make-A-Wish and that you will share this information with a friend who has a CHD child or any other life-threatening condition.

~Trent

Hope Made of Glass

I've decided to start re-posting blogs that I have written for other sites here, in case someone happens to stumble upon them. Below is one I wrote for Whole Hearts last month.

My family participates in the CHD support group at Medical City Children’s Hospital, called Amazing Little Hearts. Our group meets each month to share stories, hear doctors and others speak about CHD topics, fellowship, and support each other. Occasionally, we have an outside group come and speak to us about programs or special opportunities for our families.

Not too long after Tucker went home from the hospital for the first time, we attended a meeting that had one of these special guests. Two sweet ladies came to speak to us about a new program that was beginning at the hospital. These ladies shared the story and inspiration behind the Beads of Courage program.

If you aren’t familiar with Beads of Courage, here is an excerpt from their website:”The Program is a resilience-based intervention designed to support and strengthen children and families coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.” Basically, kids earn beads for each test, surgery, procedure, needle stick, treatment, etc. and the beads are strung on a necklace for the child to wear as a testament to their courage and resilience.

Beads of Courage supports kids with cancer and blood disorders, cardiac conditions, burn injuries, Neonatal ICU stays, and other chronic illnesses. Each of these conditions has its own specific program guide that fits the treatment cycle of the condition.

Beads of Courage is now in over 140 different children’s hospitals in the United States, Canada, New Zealand, Japan, and the United Kingdom. Over 30,000 children are benefiting from this amazing program, with more being added each day. 

Since Tucker is only 3 years old, he doesn’t really understand his beads yet, but he definitely loves them and likes to look at them. The older kids in our support group do understand the beads and know that they represent needle sticks, procedures, and the pain that is associated with CHD. Despite the fact that the beads represent “bad” things, the kids love them and wear them like a badge of honor. They know that they earned those beads with their bravery.

Our kids go through so much in their fight with CHD, it is important to reward them when the days are tough. Beads of Courage is a perfect way to provide hope and comfort, even when it seems like the fight is just beginning. The beads also provide a tangible way for each child or family to their story.

Behind the program is a large group of donors and artisans who make the beads possible. Donors and organizations provide the funds to operate the program at local hospitals. There are scores of special beads that are made by skilled glass artisans. These special beads represent major milestones in a child’s treatment and are especially treasured items.

If your hospital doesn’t already have a Beads of Courage program, you can contact them through their website, http://www.beadsofcourage.org/, to find out how to get one started.

Just like Beads of Courage, Whole Hearts Foundation is trying to bring hope to the courageous kids and families battling against congenital heart defects. Our mission is to provide education, support, connections, and innovation to our families. Also, like Beads of Courage, Whole Hearts relies on the generosity of others to be able to reach these families. You can make a tax-deductible donation to Whole Hearts by going to http://www.wholehearts.org/HowtoDonate.aspx.

Each of Tucker’s beads tells a story. They tell a story of pain, surgery, and a broken heart, but they also tell a story of triumph, courage, hope! What is your child’s story? We would love to share it with the Whole Hearts family!