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The Dell Deliberation

Quick background: Addie had her Norwood and Glenn at Texas Children’s Hospital and recently had her Fontan at Dell Children’s in Austin.

The Dell Deliberation:

The news that Addie’s surgeon, Dr. Carlos Mery, would be moving from Texas Children’s Hospital to Dell Children’s in Austin was initially exciting, then it immediately turned to worry. How could we leave TCH? How could we ignore all that we had read about Dell on social media? This is what most of the heart parents are contemplating right now. Follow the surgeon, or stay with the hospital? In our case we had two major factors: 1) We didn’t have much time to figure it out or watch the program grow. Addie needed surgery soon and the decision needed to be made. 2) We live in Austin and this was the tricky one. I loved that these amazing surgeons were coming to our hometown, but we needed to make the decision without that in mind. If Dr. Mery had gone to Dallas, would we follow him there? In the end, we based our decision on what we knew about Dr. Mery. He’s no risk-taker when it comes to his patients; we love him for that. During the rise of his career we figured he wouldn’t go anywhere that he felt would jeopardize the health of his patients. When it comes to your child these decisions are so hard to make.

That’s why I’m writing this post. For all the parents out there worrying about moving care to Dell, to the parents in central Texas just starting this journey and wondering where to go for surgery, and to all the TCH-ers with simple curiosity: Here is our Dell experience.

“You may all go to hell and I will go to Texas Dell”

I have to admit, during Addie’s first two surgeries I slept through them, aside from the updates. I think I was overwhelmingly exhausted. The Fontan was different; Dell was different. I wasn’t sure what to expect and I walked, paced I should say, ALL DAY. I could barely stand by the time we saw her. From 7:45AM to 9:00PM I walked. I will say most of that day is blurry, but we did have a ray of sunshine throughout the day. Alyssa, Addie’s child life specialist would pop in to check on us and see how we were doing. We spent over 3 months collectively at TCH and I can’t name one CLS that we had. That’s not a diss to TCH, but a praise to Dell’s focus on well-rounded care. Any heart family who has been at Dell would know how amazing she is! Most of the day we had the family room to ourselves and I walked out to the healing garden periodically to clear my mind. My nerves were put at ease once we talked to Dr. Mery. I could see how happy he was with the repair. It was different then the other post-surgery talks. He almost seemed pumped up about it and that gave us the relieved feeling we had been waiting for. Overall it was a similar dreadful day as they tend to be, but the welcoming feel from the staff and hospital left me feeling we had made the right decision with Dell.

Austin is Weird and Dell is Different

The child life specialist was just the cherry on top of the personal care we had at Dell. Aside from the three standard surgical, morning, and evening rounds, we had plenty of opportunity to speak with the surgeons or CVICU team because we saw them regularly throughout the day. We got the same amazing team at Dell with a fraction of volume of patients. The continuity of the CVICU team was amazing, and the continuity of the nursing staff was honestly surprising. The same nurses cycled through in our 27 day stay in the CVICU and IMC many times. They weren’t Addie’s nurse over and over, but we had nurses we loved that were never even assigned to her! I felt at ease with the nurses. Maybe it was that I was in my hometown, but I felt familiar with them. Austin is weird and Dell is different. There is no doubt Dell can give that kind of personal touch that TCH is too big to offer. I can only hope that Dell will do it’s best to hold onto that, especially with how many nurses they have circulating through the CVICU. To all the CVICU intensivists, PAs and NPs, thank you for listening to us and giving us a voice in Addie’s care. We know we have the right to decide the course, but we felt we were part of the conversation and that meant a great deal to us.

Austin is weird, but it’s also green. The outdoor courtyards and gardens are hard to miss at Dell. If you are just starting this journey and thinking it’s easy to escape to the hospital air flow– it’s not. At TCH it was my goal to step out in the fresh concrete jungle air once or twice a week, but at Dell I could walk down the hall, and step outside for a few minutes to take a breath. I didn’t think I would ever have ducks as friends, but there are two ducks in the healing garden that make perfect walking buddies. They hobbled along and kindly listened to me contemplate how the hell I ended up in the prime of my life talking to animals about my child’s GI problems.    

With Great Change Comes Great Responsibility.

Dell is new to complex heart surgeries, but the surgeons are not. The whole point about going to a high-volume hospital is because the surgeons have the experience they need to do your child’s surgery — remember that. The nurses at Dell have a lot to learn about CHD children — remember that too. If there are any Dell CVICU nurses reading this, all of you were so wonderful. When I say that there is a lot learn it is in no way a comment on Addie’s care. I just mean CHD patients are not like others and every single one is different. All the changes to the heart program are for the benefit of the patients. Every small and seemingly insignificant change Dr. Fraser has required for the CVICU is made with dutiful care. Change is hard and I could sense the tension for some of you.   

Saying that, I obviously sensed push-back from SOME of the nursing staff about a “new team” with “new policies.” That “team” that you speak of with parents, that’s the team that saved their kid’s life. Don’t forget where the loyalty stands on part of the parents.

I want to make it clear that I don’t believe that had any effect on Addie’s care. It was just something I wanted to note because it was obvious. I want to thank all the nurses for loving Addie and going above and beyond of her. I’m sorry you had to hear her say the word ‘agua!” 500 times a day! I wanted to make a special shout out list, but it got too long. So many of you will have a special place in our hearts forever.

Haters Gonna Hate

There is a lot of negative talk about Dell on Facebook. I am not doubting that parents have had bad experiences at Dell in the past, and no program is perfect; I’m sure bad experiences may still occur from time to time. Dr. Fraser is working hard to make the changes necessary to unleash Dell’s potential. I would think that the heart program looks much different now than it did 6 months ago. So if you are a parent thinking about choosing Dell, I recommend to only look at information from the past few months.

The Dell Deliverance

Surgery time is so stressful and you can never really “enjoy your stay,” but we felt like family at Dell. So cliche, I know! But it’s the truth! The point I want to make is that Dell blew us away with the care they provided for Addie. I want parents out there to know that they can feel comfortable taking their kids here and that they might have a better experience at Dell then they did anywhere else. No heart program out there is perfect, but we found Dell to be a well on its way to the top.

Our experience in pictures:

A few days post surgery.
few days after

Visit from Rosie the therapy dog.

Walking with the ducks.

Walking around the healing garden.

Walking down the CVICU pointing out all the nurses water bottles.
icu walks

Watching movies on the play mat-turned futon.

Getting ready for discharge.
getting ready for discharge

Edited by: Elsbeth Deleon

Advice from Antonio: The unique experience of being a physician and a CHD grandparent

Dr. Antonio Falcon is the grandfather of heart warrior Addie. He shares his feelings of the overwhelming joy of being a grandparent, and the overwhelming sorrow that comes with a CHD diagnosis. He has a unique experience of being a physician with a grandchild diagnosed with Heterotaxy and CHD. After 42 years of practicing medicine he is now realizing the impact his patients feel when he gives a life-long diagnosis.


Advice from Nina: A Five-Year-Old Heart Warrior’s Perspective

Nina is a spunky five-year-old who has already been through more in her lifetime than most will ever experience. She’s full of sass and her wise advice is on point. Listen to Nina’s advice for kids and parents on their heart journey. She gives me so much hope!

Here’s a little background on Nina, from her Mom, Lani:

Diagnosis (given at 20 weeks gestation):
Norwood / BT shunt at 8 days
UnifocalizationUnifocalization for MAPCAs and shunt upsize at 6 months
Glenn shunt at 21 months
Fontan at 4.5 years
Nina had her first surgery at Dell Children’s in Austin, TX and hit a number of complications: she suffered hemi-diaphragm paralysis and was ventilator-dependent for 2 months; she suffered bilateral vocal cord paralysis and was trach-dependent for 15 months; she could only digest small volumes of breast milk via an NG tube because of poor blood perfusion to her gut thanks to her MAPCAs (major aortopulmonary collateral arteries), and she had multiple cases of “medical NEC” along the way. Nina’s first year or so of life was a real doozy, and she didn’t come home from the hospital until she was 8.5 months old — something we definitely hadn’t planned for. Her last 3 heart surgeries have been out at Stanford Children’s in Palo Alto, CA and she has exceeded all expectations. She loves monkey bars, dinosaurs, acting, karaoke, and sushi. We never dreamed she’d be doing this well, and we’re so thankful that we found the perfect surgical center for her complex cardiac care.

Advice From Sean and Lani: Participate, Expect the Unexpected, and Practice Self-Care

Sean and Lani are the parents to Nina, an incredible five-year-old heart warrior with a single ventricle heart, hypoplastic right heart syndrome (HRHS), pulmonary atresia, tricuspid atresia, and MAPCAs. Nina has undergone the Norwood procedure/BT shunt at 8 days old, unifocalization for MAPCAs and shunt upsize at 6 months, Glenn shunt at 21 months, and Fontan at 4.5 years.

Watch for our next post with Nina!