The questions.

I had an overwhelming response to yesterday’s post.

It makes me joyful to hear how many are joining us in praying for Evan.  And I am glad that many are “overwhelmed” by his condition.

It should be overwhelming.

And I think that the severity of Evan’s heart is not one to be taken lightly.  It should be respected.  And that’s where these questions come in that I’ve been asked over and over again and some that I think some of you want to ask – but feel like you shouldn’t.

 

The medical questions:

Q: Why Boston?  I thought your home hospital in Dallas was doing a good job with Evan?

A:  Dallas has done a phenomenal job with Evan.  I won’t hesitate for a second in sharing that.  There is, however, a point in which I had to ask myself if Evan’s heart was too much for our center.  It was a judgment call on our end as parents.  We felt that Evan had to be given every opportunity if we were able to do so.  We did our research and heard from many other Heterotaxy parents (Evan’s specific condition) that Boston was what they called a “high volume center.”

We made the trek up to Boston and met with the surgical team.  What we wanted was clarity.  What we wanted was something that would tell us making this sacrifice would be worth it.

And we found it there. Boston sees about 1 similar surgical case to Evan’s condition a week.  While Dallas is a big center, from what I have researched, it only sees about 5-15 cases a year. It has never been an issue of surgical skill because Dallas is highly skilled.  It comes down to the hard fact that the Boston team sees 3 times more “Evans” a year.  That means that they have more numbers, they have more data, they have more experience.   While Evan may be complex and difficult to many, to Boston, he is something they have seen.  He is something they have operated before.  He is someone they have experience and success with.

Q: You said that even if you go to Boston and have this surgery, Evan may need a transplant still.  Why don’t you just stick with the “less risky” surgery (Fontan)?

A: One of the many challenges we face with Evan is not just his heart.  His heart is directly related to his syndrome – Heterotaxy Syndrome (or Situs Inversus).  While the Fontan in “normal” single ventricle patients will fail – either the heart or the liver fails – which lead to transplant.  In Heterotaxy, there are sometimes hidden and unusual vasculature (blood vessels) within the hepatic circulation (liver circulation) that drives the Fontan to fail much faster.  The chances of the terminal risks associated withe Fontan – namely something called Protein Losing Enteropathy (PLE for short) or plastic bronchitis is increased by 35-45% in Heterotaxy kids.  Because of the uniqueness of Heterotaxy, often what is being seen in patients who have had the Fontan is not just a need for a heart transplant but also a need for a liver transplant.  And once you get those two key organs involved – you are looking at systemic (whole body and other organ) problems.  It’s a terrible domino effect.  After Craig and I came to this realization, we essentially are choosing the lesser of 2 evils but it may pay off greatly if the bivent is successful.

Another key is the high success of the Fontan.  Funny, right?  But, with the Fontan seeing so much success, there are children and adults living with a single ventricle heart. The problem here is that the Fontan will fail. And when that happens, a transplant will be needed.  The supply for hearts in the future will be so great and there just may not be enough donors to save those who need hearts.

Q:  I still don’t get it.  If you say the bivent – Boston surgery works – why would there still be a risk for transplant?

A: In every complex congenital heart defect, there are myriad of issues that can greatly affect the integrity of the heart muscle itself.  How the valves work, the pressures in the chambers, the electrical conduction pathway of the heart, etc – are all interelated to overall success of the heart function (or the squeeze and relaxation of the muscle).  When the function is compromised, you have to consider the ramifications of that and sometimes the only option is transplant.  This doesn’t just apply to Evan’s special heart, this pertains to all complex heart defects that require a lot of “work.”

Q:  You keep saying this surgery is “risky.”  I get that it’s a heart surgery, but Evan did great the last two times.  Why is this one a bigger deal?

A:  Because no matter how routine a surgery is, there is a great risk behind it.  Evan’s surgery is risky because of all the work that has to be done to his heart.  He will be on cardiopulmonary bypass (a pump that acts as his heart and lungs while his heart is stopped and the surgeon works) for a much longer time than he has been in the past. With that, comes great risk.  But, there are measures taken to keep this process as safe as possible.

We are going all the way to Boston because Dr Del Nido, the surgeon performing the surgery, can be argued as one of the best cardiothoracic (CT) surgeons in the world.  He sees a high volume of heterotaxy kids and feels a familiarity with Evan’s specific defects.  He is also one – if not THE best – valve surgeons.  Boston has a department dedicated to following those who have valve issues and the valves in Evan’s heart will need to be watched for his lifetime.

I feel confident in Dr Del Nido’s abilities surgically. What is crucial, though, is the recovery.  Evan has to do the rest.  My boy has to learn to adjust to his new circulation and the rest of his body has to comply.  This is the part for me where the risks lie.  Stupid heterotaxy also plays a big role in this.  There is an increased risk of infection, a greater chance of abnormal heart rhythms post surgery.  There are many complications that can happen in recovery…but that’s why we are going to Boston that sees patients like my boy on the regular.  We know they will be able to manage anything that may arise.

Q: Since this surgery is so big and Boston will repair his heart, why will he need more surgeries or heart catheterizations in the future?  

A: Think of this surgery as taking a car engine that needs an extensive amount of work done to get it working to its potential.  But, you wouldn’t make the assumption that a tune up, or new hoses, or some tinkering here and there wouldn’t be needed.  That is essentially what has to happen.  This is, what we hope, is the first of a successful journey to a valve replacement…and that’s it.  Evan’s pulmonary valve will need to be replaced when he is older.  Because, well, he will outgrow that valve.

The valve that has to be split in two to make the mitral and tricuspid valves will need to be monitored very closely.  There is a chance for it to be “leaky” or “regurgitation.”  If this is the case, another surgery will be needed to fix the leak or change the valves.

If valve replacements after this surgery is the biggest hurdle we face for Evan – I will take it.  That is what Craig and I hope for.  Is that in the future as a teen or an adult he may need a new valve…and not a new heart.

Q: Man..so with all the work…how long will surgery be?
A:  Long.  I will get details from the surgeon on pre-op but even then it is just an estimation.

Logistic questions:

Q: When are you leaving?

A: I am leaving with Evan on 2/20 for pre-op on 2/21. Craig and Isabelle will follow us on 2/22 because we are trying to save as much of Craig’s time off from work for Evan’s recovery.  Surgery is 2/24.

Q: How long will you be in Boston?

A: Our cardiology team in Boston cannot give us concrete dates on what to expect in recovery.  We hope to be out of the ICU within 2 weeks.  But we just don’t know.  To be prudent and to make sure Evan is in Boston if complications arise, him and I plan on staying there for at least 2 months after surgery.

Q:  Wait…you just said Evan and you.  What about Craig and Isabelle?

A:  Oh the joys of the Heartlife. My family will be split in two once again…only this time…we will be thousands of miles from each other.  We need Craig to work (as long as Evan is stable) to save his time off in case we travel back to Boston for follow up visits. And as much as I love my Isabelle, she needs her routine.  And although I have been homeschooling her, she will get to go back to pre-school with friends and teachers that love her. As difficult as it was for us to be apart during Evan’s heart catheterization in Boston, we hope that Craig being home with her will be easier on her.  Our hope is for Craig to fly every weekend to Boston to visit Evan and I…and if we can swing it…Iz will come once more while we are away.  Yes..you can cry. My heart breaks thinking of being apart from her for over 2 months.

Q:  Where will you stay?

A:  We are staying in family housing that is similar to the Ronald McDonald house.  It is for medical patients in the area and their families who will be traveling for care.  Evan and I will have a room with 2 queen beds for when Iz and Craig are with us and a Pack n’ Play for Evan to sleep in.  There are play areas, living areas, and full kitchen. It is MUCH more affordable than a hotel or renting a furnished apartment.

Q:  Holy moly…flying to and from Dallas, hotels…how much is this going to cost?

A: A lot.  As we say in the Hounsel house – hashtag truth. Our medical deductible, the cost of flights, the cost of accommodations, the cost of meals…it all adds up.  But, we knew this decision to travel for care would not be easy especially for us financially.  But, when it comes to your child…you find a way.  And Evan is worth it.  We never look at finances when we make medical decisions for Evan (or Isabelle).  We have some amazing family support and know that things will work out. Some may think this is irresponsible not taking into consideration the financial aspect of all this. We have taken the financial aspect into consideration…and we came to the conclusion that we just can’t put a dollar amount on the best care.

Q:  What do you need?  

A:  Prayers. And more prayers.  (I will do a specific and LONG post on my prayer requests). I don’t blog and have a Facebook page for Evan because I like to YOLO it.  I share his story because 1) I hope to give encouragement to another family going through the heart journey, 2) To be a living testimony of God’s healing power, and 3) To have a way to share his story with the masses so we can band together in prayer and cover our boy and my family during all of this.

So share our story.  Share our blog and our FB page.

Q: Ok, we get the prayer part. But, what do you need tangibly?  

A:  I don’t know to be honest.  I have a friend here who has offered to do a meal train for Isabelle and Craig for when they return to help Craig get adjusted to being on his own. I’ve had friends ask to send care packages to Boston for us.

Since I have never stayed in the family housing or in the hospital – I’m not sure what their policies are for food being stored in the bedrooms or patient areas.  I know I have a shoe box size area for food in the pantry and refrigerator…so that is not a lot of space for me to keep things.  While I really appreciate the gesture, there are so many little details about being away from home that are foreign to me.  While we loved getting care packages for our family full of snacks and yummy things our past hospital stays – Craig was able to drop them off at home and not keep them at the hospital.  I will get meals for Evan through the hospital and my plan is to just purchase meals for myself  (there is a Starbucks across the way, Au Bon Pain in the hospital, some local pizza places, a killer burrito place, and  food court next door. (So maybe someone can hook me up with a personal trainer for when we return…holy hospital stay weight gain Batman.)

I love the idea of cards and small items for Evan to help cheer him up – balloons, little toys, crayons and coloring books.

I will need constant reminders that you haven’t forgotten me or Evan…so drop us some snail mail with a post card, send me a shout out on FB, comment on my blog posts, write an email. Text me. Call me. *(If you want to mail me something in Boston, I will post an address once we get to Beantown).

Or come visit us when Evan is out of the ICU. Please take your personal vacation days, spend your own money to buy flights and hotel stays to give me a quick hug. That’s not over the top at all.

But, we are really blessed.  Truly –  in that all we could ever want or need for our family. So what we need most is prayer.

For now…the only prayer I ask for is for health over all of us but especially Evan.  He is getting over a double ear infection and head cold and we need him healthy and well or we will have to reschedule surgery.

I hope I answered your questions – if not – we are an open book – our story is meant to share, inspire, give hope and be a testimony – so ask away.

Thanks for all your prayers, good thoughts, and super healthy vibes.

Evan is a fighter.

Join the Fight.

 

Comments

  1. We will be praying for your little guy and your family. We went across country to Boston for our little guy(HRHS ect.). We also had a room where you are staying. The little box spaces in the fridge and kitchen aren’t that big, but adequate. There is a washer/dryer in the basement which is very nice. They do provide some meals at the house, there is a schedule posted. The hospital is an amazing place. Take care and praying for you all.

  2. Hi Czarina,

    I have been following your beautiful boy Evan for a while now. I too am a heart mom and we live in Boston! We live about 40 min north of Children’s Hospital. We would love to help you or at least offer you a place to get away from the city for a while. Please email me and we can keep in touch. We would sincerely love to open our home to your family. I had no idea until today that you would be here for so long. You can check out our blog at onein1hundred.blogspot.com. We will be praying for Evan and your family. Email me!! XOXO Kristen