One final surgery

The transplant team was supposed to call us and give us a two hour window in which we could decide to go back down to the hospital and walk with Travis to his final surgery. Waking up the next morning, I knew something was wrong. We hadn't heard anything. We waited until early afternoon to call. The coordinator apologized for the delay but said they had found a match at UCLA and that they would be able to use his kidney and liver. Through the pain of losing my boy, I was thankful that he would live on in someone else. We headed down to the hospital to say one last goodbye. Our parents came too. We all took a few more minutes with our boy. Even though I know he was already an angel, it felt good to sit by him and hold his hand. It felt good to remind him we loved him. I made sure to tell him that his last surgery wouldn't hurt and that he was such a hero to help someone else out. Roger and I walked with the nurses and the everyone else as we proceeded to the OR. Although it was late in the evening, patients and parents still watched as this huge parade went by. I wanted to yell at them. I wanted to tell everyone what we sacrificing. I wanted to tell them that my beautiful boy was giving us all one final act of bravery and strength. We stopped at the elevator and the head OR nurse said. We need to stop here. I kissed his hand and they wheeled him away. The was the last time I saw my baby boy. The boy who had brought us 16 months of joy. The boy who taught me what true love is. The sweet boy who had to fight so hard from the moment he was born. It wasn't fair.

The social worker asked if we wanted the blanket he was wrapped in. She asked us to wait in the lobby. We sat there....in the same lobby where just a couple days ago we had waited with our boy for his 4th surgery. He was so full of life. We were so full of hope.

Now, we were all empty.

The social worker and transplant coordinators came out with some things for us. Among them, the blanket he last was wrapped in. They also presented us with a medal. The medal signified that Travis was a hero and gave the ultimate sacrifice. They promised to call once they all arrived at UCLA. With our family, we walked out of the hospital. We were all broken. I'm not even sure how we had the strength to physically move. I just wanted to stay there. If I didn't leave maybe all this would go away.

We went home and spent that evening sleeping/sobbing/waiting for a call. The next morning we received a call from the transplant coordinator. She had horrible news. Once they got to UCLA it was determined that his organs were sicker than they had thought. They were unable to transplant them. She assured us that Travis was still a hero and will always be for our choice to donate. Our hearts sank. As if things could get any worse. She mentioned that they would still use his eyes at the eye bank for research and such. His beautiful green/blue sparkly eyes. I remember just being a mess. How could God not at least give us this gift? I GAVE UP a chance to hold my boy wire free for this most precious gift and it didn't even happen. I still have such anger over this. I know that we tried our best.

**********

The last several posts are some of the details of Travis' last days. Living it was painful. Revisiting it is also painful. I guess I just wanted people to see just all my sweet guy went through. How strong he really was an how much our family sacrificed. These memories run through my head often. It is a miracle that grieving parents can even get out of bed, let alone try and function. We are constantly haunted by this....constantly reminded.....constantly in pain.....constantly living half in this world and half with our baby in spirit. It is exhausting.

Missing you more than you will ever know Mr. Man. <3<3<3

Balloons for Travis

Addison Sue honoring her brother by sending him a balloon

Balloons for Travis, the Facebook page, is a tribute to the life of Travis Gary DiCarlo and a place for all of Trav's family and friends to remember him and his influence on our lives. Please share your photographs from your balloon release or tribute in how you remembered Travis today. We've also asked those who find the Rememberance Tags to log onto Balloons for Trav and post where the tag was found.

tinyurl.com/balloonsfortrav

The worst kind of wake up call.

After a long emotional day, I sent Roger to the Ronald McDonald house to get some rest. I'd stay with Travis until 5am and then we'd switch off. We had two nurses that night (two are needed to run the ECMO circuit). One of them was a nurse Travis had in the NICU. Loved her. The other was a complete jerk to me. She barely said one word to me the whole night. She didn't offer me a blanket, didn't offer me water, didn't try to small talk....nothing. I held Travis' had with my right hand all night and played on my computer with my left. I remember watching episodes of Tough Love on HULU. I was so tired but couldn't bare to leave that room. I honestly thought that even though Travis coded and looked terrible, he'd pull through. I knew a lot of storied about kids on ECMO that came off. That was my hope. We just had to wait it out until the next day when they'd run tests. Roger got there at 5. Before I left, I told the grumpy nurse how I felt. I told her that even though Travis was the patient, she could have been a little more caring towards us. I told her that after a super horrible day that last thing I needed was a bitchy nurse.

I left and walked wearily across the street to our room. My head hit the pillow and I was out. I had been asleep for maybe 20 minutes when I got the call.

Roger said to get over there right away. He couldn't even really talk. I just remember him saying his eyes weren't responding to light. They were transporting him to CT scan with the ECMO circuit (which is a HUGE deal). I jumped out of bed and rushed back over. We waited as a huge team of people came for transport. They closed the unit down. It's not easy to move someone on life support. I remember waiting in the hall as the scan took place and walking back behind this parade of people. Other families and patients watching us with fear. Full of fear ourselves.

It would take several hours later for the neurologist to come and give the report. They brought us back into the conference room we were in the day before. Dr. Lamberti and the ICU doctor told us the worst news one could ever hear. There was too much damage to his brain. IT was swelling and they did not see anything the could do. We had to say goodbye. The next few hours were spent talking to people. Social workers, transplant people (we wanted to donate his organs), doctors, our families that came to say goodbye. The social worker brought in a box of memory makers. We took fingerprints and cut some of his sweet hair off. We took pictures. I asked to hold him. They said okay but looked fearful. In order to transplant his viable organs, he had to remain on the ECMO circuit until harvesting. And, the ECMO circuit was quite specific with placement. One wrong move and it could mess things up. The nice nurse from the day before was determined. We let Roger go first. He sat in a chair by the bed and held Travis briefly. It wasn't the snuggle we wanted. It was holding our sweet boy with tubes and wires and machines with just our arms straight out. Then, it was my turn. I sat down and they worked hard to get him transferred to me. Once things were set they set him down and alarms started beeping....they had to reposition him and couldn't get it right until he was flat back in bed. I gave up my last chance to hold my baby so that his organs could help someone else.

Late that evening we said our goodbyes and left. We left with him still on the machine and the transplant team working hard to find matches. We went home. To an emptier home.

I remember just feeling so tired and numb. I remember hoping that his organs would be a match and that someday we could meet the person who they went to and tell them about our miracle baby. I remember hugging Addie Sue....so much pain I felt for her. She was so young and never really got to know her brother. I remember worrying about my mom and my sister. If they were okay. And, I remember falling asleep praying it was all a nightmare.

....continued tomorrow.......

CELEBRATION OF LIFE

TRAVIS TRIBUTE VIDEO

Our lives were forever altered...

It had been a smooth night in recovery. All day the doctors were toying with the idea of extubation. I went out to call my mom for an update. I saw Roger walking out a few minutes later. He said they were extubating. I was mad it happened so quick. We weren't let back in for awhile. I knew something was up. He had a difficult extubation and the nurse told us we needed to be real quiet and keep him calm. He started getting agitated. She told me to hold him and try to calm him down. She gently set him in my arms and his body went stiff. He coded.

She grabbed him from me and told us to go in the hall. People started running. I heard people yelling "DiCarlo's coding". His surgeon came running. Lots of commotion then the social worker ushered us into a nearby conference room. It felt like forever that we were in there....praying, watching the rain on the small window. The social workers called our family. Soon, they were there with us. They put him on ECMO. The nurse and Dr. Lamberti came in with tears. She said they thought they were able to keep good p waves for the entire CPR process (all 2 hours of it)....and that his heart started again. Those were good signs in a situation as horrible as this. They'd keep him on ecmo and let him rest. The next day they would run test to see what effect everything had. We were so hopeful........

One Year

One year. 365 days. 8760 hours…..since I last held my baby. We were terrified driving to the hospital. We had a bad feeling about it. We were there early and Travis was the cutest in his jammies snuggling with us as we waited to take him to pre-op. He wanted NOTHING to do with the blood pressure machine, the pulse ox or ANYONE in scrubs. He watched elmo with us while we waited for the paperwork and call time. We kissed him goodbye and he cried in the arms of the nurse all the way down the hall. We kept it together until the doors shut. It would be 10 hours until we saw him again. His surgeon was haggard looking but pleased with the surgery. How could we have known that things would change so drastically during extubation. We would never see him awake and alert again. 48 hours later, he was gone.

It is so hard to live with this pain. Nobody can understand it. It affects every aspect of your life. It rips the joy from everything. It changes you. It damages you. It cannot be repaired. People ignore it.

But we have to live it.

We live it in every family photo. We live it in every other CHD warrior. We live it in every smile Addie gives us…her smile so achingly like her Bro-Bros. We live it in all the “What Ifs”. We live it in all the regret. We live it every time anyone asks about our kids, or how many kids we have. We live it when people talk about their son(s) as if we never had one. We live it in every birthday. In every little boy we see. In every one of those shattered dreams we had and all the hope we held.

I miss my boy.

The depth of that statement is more than I can ever fully express.

Watching Elmo and holding onto his Brobee toy.

Daddy and his boy waiting to go back to pre-op

Trying to entertain my boy so he wasn't scared.

Photo Challenge - In memory of Travis

Our worst fear is that time will pass and people will not think of Travis as often or remember his sweet beauty. This week will be very tough so we thought of one thing that we would love to see.

PHOTO CHALLENGE: Over the next week if something catches your eye that reminds you of Travis, take a picture of it and e-mail it to us. It could be something that reminds you of him or just something extremely beautiful and full of light (like Travis). We'd like to gather all these photos and turn them into something we can keep and look at often.

Please pick your favorite photo and post it on Team Travis Facebook page or e-mail it to me by Monday, February 20th. Thank you!

Roger - rogerd56@yahoo.com

Team Travis Facebook Page

Sharing Travis' story

Here is an article that was written about our family and the struggles and triumphs we have had over this past year.

The article came about when the sports writer was shocked that I was back to coaching and asked if he could do a feature on our family. I was honored to share our story as we have shared our entire journey with Travis and beyond. Anyway that we can keep Travis memory alive is okay with me.

Here is the article. STAYING STRONG by Terry Monahan

A few errors....1) 'most' HLHS patients do not live into their 30's. Most do not. The surgical approach is too new to know how long anticipated survival is. 2) You all know travis passed away after his FOURTH surgery....not his first.

Staying Strong for Addie Sue. Love that Travis picture is in the background.

I wear a small "T" pin on my heart for my boy.