Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Saturday, February 2, 2013

Day 3: MEET JAXX AND DUSTIN



Today, I introduce to you, two might warrior angles.  Their lives on this earth were full of fight.  They are an inspiration to me and their mom's are amazingly brave to share their lives with us.  Meet JAXX and DUSTIN!!!







MEET JAXX!!!




2012 quickly became the best and worst year of our lives.  From the day we found out we were pregnant we could not wait to meet our sweet baby.

Jaxx Alexander Theoharis was born on February 3, 2012 with Hypoplastic Left Heart Syndrome.

In October of 2011, I went to my 20-week ultrasound and my OBGYN informed us that he could not see everything he needed to see concerning our babies heart. At that time, he referred us to a cardiac specialist. A week later we found out about our son’s heart condition.

My husband and I wanted to do everything in our power to give our son the best chance at life.   We spent the next weeks and months doing as much research on HLHS as we could.  We visited Children's National Medical Center in D.C., John's Hopkins in Baltimore, and Fairfax INOVA in Virginia. After seeing all of the hospitals, speaking to cardiologists and doctors, and thinking about where Jaxx would get the best care, we decided on Children's National.

Jaxx was born at Washington Hospital Center in D.C. and was transported to Children's within a couple hours with his father. The doctors informed us that it was a blessing to know about his defect in advance because if we didn't, they would have sent us home.  He was the most beautiful baby.  He looked so perfect; it was hard to believe what was going on inside his tiny body.

Four days after his arrival, Jaxx had his Norwood surgery. Everything went very well during the surgery and the doctors said everything looked extremely promising. Jaxx came out of surgery with his chest open and several days later the surgeons attempted to close his chest but could not. This is where Jaxx's health started to decline. Because everyone was nervous that infection could be setting in, they attempted to close him again but failed for a second time. This is when they decided that Jaxx needed to go in for a heart catheterization. When the doctors came out of the catheterization, they informed us that there was really nothing wrong and that maybe he just needed a little more time. We were able to go back and see him at this time. No more than ten minutes later, my husband and I were in the waiting room explaining everything to our family members who came to be with us and our social worker and a doctor came running out and took my husband and me into a private conference room. They informed us at that time that Jaxx suddenly went into cardiac arrest. They also told us that they were attempting to put him on ECMO. We were absolutely crushed. The doctors were able to get Jaxx on ECMO in less than 30 minutes, which was amazingly quick for such a serious procedure.

After this event, Jaxx started pulling through. Jaxx was able to come off ECMO after only four days and he seemed to really start getting better. About three weeks later, the cardiac surgeons and a plastic surgeon attempted to close him again. This time, they were able to close Jaxx's skin but none of his chest bone. They did this to minimize his chances of infection. A couple weeks later they decided to go back in to close at least part of the bone because Jaxx was not getting enough pressure on his lungs and was having trouble breathing. They were successful in closing just the top section of Jaxx's chest plate. After that, he seemed to be on the road to recovery.

Over the next couple months, Jaxx's health really improved and he needed less and less support from any machines and medications. He began smiling, crying, giggling, and looking around. We were finally able to pick him up and hold him again after months of not being able to. Jaxx was doing so well that he was sent to the Step Down Unit.  We were so happy that things we finally started to go well.  It was only a matter of time before we would be able to take our sweet baby home.

The doctors were ready for us to take Jaxx home but he was still struggling with eating.  They decided to best option was to put a G-Tube in. Everything was going so well and they told us on a Friday that we should be able to take him on the following Monday. That Sunday, Jaxx seemed to be more uncomfortable than he had been in a long time. He was breathing very hard for no reason and his saturation levels began to bounce up and down. They gave him oxygen and it seemed to fix the saturation but not the labored breathing. When Monday came it was supposed to be the best day of our lives but instead Jaxx's night went from bad to worse and he ended up back in the CICU re-intubated.

Over the next three weeks or so, Jaxx's health was very unpredictable. So much so that the doctors had to go back in for another heart catheterization. My heart was broken.  He was doing so well and now they wanted to do the same procedure that put him on ECMO last time. When they came out of the catheterization, they said that they had to put a couple balloons in his shunt because it had narrowed and that he should start doing much better. Jaxx seemed to get better for a week or two and then the breathing and saturation problems began again.

At the end of May, Jaxx unexpectedly went into his second cardiac arrest. This time, it took the doctors about an hour to get him on ECMO. Two days later, Jaxx's surgeon told us that there was nothing more he could do.  Our world came crashing down.  Those were the words we had been dreading to hear this whole time.  He told us that our only options were to go somewhere else and see if he could get a heart transplant or to just take him off ECMO and let him go. It was not a difficult choice for us to keep fighting for our son. All of his doctors and cardiologist said that they thought we should continue fighting and not lose hope for our baby.

So we traveled to Pittsburgh to have him evaluated for a transplant. Jaxx was transported via Medevac on ECMO. While in Pittsburgh, the surgeons were able to perform Jaxx's Glenn. They were successful in the surgery but Jaxx was still not strong enough to come off ECMO. A few days later though he was able to come off, but he still needed the support of the ventilator. Because of the time it took to get Jaxx on ECMO the second time, the doctors in Pittsburgh were concerned he may have suffered brain damage. They ran a lot of tests and discovered that he had suffered severe global brain damage. Because of this, Jaxx was no longer a candidate for a heart transplant. We were also informed that if Jaxx went into another cardiac arrest, that they would not be able to perform chest compressions so palliative care workers came to discuss everything with us. We thought that it would be best to go back to D.C. to have the support of our families.

After a few more days, the decision had been made to travel back to D.C. so we could be close to family and to take Jaxx back to the only home he had ever known. When we returned to Children's in D.C., we discussed Jaxx's health and future with everyone there and they all had the same feelings, which were not promising for him.

About three weeks later, Jaxx passed peacefully from this life the night of June 28, 2012 in my arms. 

Jaxx affected so many lives during his short 5 months on earth.  People grew to love him without even meeting him.  He will forever be in our hearts and on our minds.  He changed us in ways that we never expected. We love him and miss him terribly, but we know that he is looking down on us from Heaven and that his heart is now whole.   











MEET DUSTIN!!!



Hello my name is Shawnya Stephens and im the mom of Dustin Stephens. Where do i even begin, well my son was born with single ventricle and when he was a little over 2 years old they did surgery on him at Little Rock Childrens hospital in Arkansas. Not long after surgery while he was still in the hospital he began having trouble and he ended up on ecmo for 9 days. the doctor came in and spoke with me to inform me that there wasn't much they could do except put him on the donor list for a new heart. I couldnt believe what i was hearing, but i was willing to do anything to save my son. Then a miracle happened, the next day they had a heart for him. We waited anxiously for my son to be done with surgery and when the doctor came in they said everything went great, oh what a relief. I cried happy tears.. A few years later we moved to California and got him a doctor in madera. Everything was going good for him all those years with his new heart until January 2012. I had to call the ambulance to come get him quick. He didnt look good and me and my son was both scared. They wanted to sedate my son to transport him to the hospital in Los Angelas and when they put the medicine in his I.V. To sedate my son they lost him and began cpr on him, after a while they got a pulse. Throughout the whole thing i was there and saw everything. My son ended up on life support and they said there was nothing that could be done to save him. So for 6 days he remained on the life support, one night i sat there looking at him and began to cry cause i knew that he wouldnt want to be like that. I had to make a decision to take him off the life support and on January 21st 2012 at 4:53 p.m. my son passed away. I held his hand as he took his last breath.... I miss my son and there isnt a moment that goes by that i dont think of him. I love u Dustin and someday we will be together.... Dustin Stephens 10/14/92 to 1/21/12





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