Travis was born on 07/04/2013, pink and vibrant, weighing 8 lbs.
and 11 oz. at birth. And he was born with Heterotaxy, a rare congenital defect.
We learned about Travis’s heart condition at 25th week of
the pregnancy and thought that was the only issue. Heterodoxy as a new
diagnosis only came after 1 day he was born. We had intense meetings and
discussions with our medical team and consultant before and after he was born
and did extensive research regarding choosing the best medical and surgical
team to care for him.
Boston Children’s was our final choice. 10/02/2013 we took
Travis to meet the surgeon and the team for the 1st time. The initial echo
looked promising. The size of his left ventricle is good enough for a
Bi-Ventricular repair which is considered the best solution for babies who are
born with a single ventricle. Although he had pulmonary stenosis and pulmonary
hypertension, these two conditions together have formed a nice balance that
lasted him a good 11 month before we were called for the surgery. Travis grew
well in the first year with no medical intervention, the only thing that’s
slightly noticeable setting him apart from other babies was his purple tint
lips under a gradually declining blood sat, 83 at his 11th month, 93 to begin
with at birth.
The 1st surgery, then the only surgery that he would need in
our mind, was scheduled on 06/05/2014. Travis was all ready. I kissed his
perfect little chest for the last and waved good bye while he was busy playing
the new hospital toys in his premeditated drowsy state. 7.5 hours later, we
shook hand with our surgeon. “All went well”. And we exhaled. Post-surgical
recovery was longer than we expected. Soon we learned that the mitral valve
regurgitation was the reason of the slow recovery and it had to be repaired.
Reluctantly and sorrowfully, we opened our arms to welcome the surgery #2 to
take place, envisioning this marking the successful ending of Travis’s surgical
journey. It was over and again” all went well”. The prolonged recovery began
again. At one point his recovery took an upward turn and we were happily
relieved he was finally transferred on his one year birthday to the recovery
floor. Then 07/08 came, the darkest day
of my life, we were pulled to the small meeting room to talk to the team, whom
informed us, unfortunately the repair didn’t last, the regurgitation remained
and persisted.
But they didn’t keep us there for more to be done. They let
us go home with the hope that over some period of time, Travis can grow and
hopefully the regurge will tame. We set our foot to home on 08/04, exactly two
months after the first surgery. Travis did enjoy his home stay after being away
for so much. He did grow and we did take many pictures with him smiling under
the bright sun. Then he was hit by a cold 2 weeks he came home, then the
decline began.
From later August to later October, Travis’s life was
thinning out in a gradually but distinctive way. He started feeling more
fatigued over time, eating half of what he used to, then 1/3, 1/4, then finally
1/10. Having no interest in activities and crying through his many days and
nights with his very weak voice then. And the vomiting episodes became a
potential of his daily routine, from once a week, to 3 times a week, he began
to throw up every other day if not daily starting the end of October. We did
engage in all doctors and psychologists, physical therapists in the picture and
the overall conclusion was that he just needed more time to recover, based on his
mystically great looking echo reports.
We called Boston Children’s and scheduled the painful trip
of truth searching. 11/23/2014, 5 months
after his first surgery, we came back. Friday morning was his cath, Travis went
into cardiac arrest during the anesthetic process before the test began. And
the answer was granted, finally. We were relieved, with pain. The 3rd surgery,
an emergent one was scheduled right away, again to repair the much worn out
mitral valve, as the final hope it would last this time. 11/24/2014 Monday, an
already intubated Travis was sent to the operating room. We felt nervous more
than ever before, knowing how very fragile he was, with absolutely no reserves
through the month’s long decline. And he came out, same puffy, same cold, same
pale and same breath. The days then was all about the monitor screens, every
number change, every med change, and every plan change. No luck this time,
still. His blood pressure and LA pressure remained high under all measures. 7 days later, the 4th surgery of mitral valve
replacement took him back again on the surgical table. Now the new game was to
watch if he AV node will come back after being injury during this surgery.
12/11/2014, 10 days after the 4th surgery, a permanent pacemaker was put in his
belly, marking the 5th surgery during his mostly bedridden second year of life,
from 11th month to the 18th month. The
storm did die down after all. He did seem getting better in his spirit and
physical being through the rest of his recovery journey, there was really nice
weight gain and plenty of happy faces and playful moods, all the way until the
day we came back to Chicago, on the day upon departure we were rest assured
that” Travis is nowhere near the need of a transplant” by our team.
01/25/2015. After another exact 2 months stay in Boston. We
were happily returning home after the last day pictures taken with the whole
Smith clang. Travis started throwing up in the taxi on the way to the airport.
And he continued on during the entire flight until he ran out every single
spare shirt and coat. We called Lurie as soon as we land and went straight to
be admitted, the dust settled at 11:30 p.m. that night, our hearts sank into the
endless dark night.
Travis didn’t get better as we and the local team had hoped.
He kept throwing up multiple times at a day. Those were the toughest and
wickedest days and nights with so much struggle of wanting water and milk and
constantly being denied and rejected. A week later, he went into another
cardiac shock while the nurses trying to replace his old IV. As much as the 3
pokes and 1 hour of hysterical crying did it, his tiny body of extreme weakness
didn’t help whatsoever at all. The intensivist doc noticed me that the chance
for him to be through this with a breathing tube put in is only half the
chance. I refrained the selfie I was trying to take with my son whose life was
again on a thin line in his forever land of hospital bed, gasping in every air
he could use, holding the faith that I would take a good picture with his happy
face, before I was asked to leave the room. Then the miracle boy survived
through the heart wrenching night.
The team informed us that there was no way he could recover
on his own unless with a new heart. With much debate in the eternal thought
process, Travis, “the sickest child in Illinois”, was put on the wait list as a
status 1A patient on 01/31/2015. Then our mind still shifted towards Boston,
the last and the forever panacea, for the very last confirmation. With the med
flight arrangements through overcoming the impossibilities, with the Boston
CICU bed generously awaits, with our Boston surgeon’s one and always vision for
his native heart, Travis declined the offer of leaving Lurie, with big drops of
tears falling from his tightly closed eyes, as if he was saying” please let me
be, no more and more”. 02/03/2015. Travis’s put back on the list. No more and
more. And The Wait Began.
Midnight. 02/19/2015. We got the call with immense
gratefulness. Still and still, we talked
about the decision with our consultant/family friend for another 2 good hours
out of the deepest mind of dilemma. Yes came firmly after that.
Early morning.
02/20/2015. We said good bye to Travis, again. I listened to his to me
still very fine heart beats and took picture of him with the surgeon whose eyes
looked confident and compassionate. 8
hours later, we welcomed our new boy back, with a new heart beating in his
brave chest.
Travis’s heart story didn’t end here. And it may never end.
There were other unthinkable swirls of rejection issues that came with
drastically invasive treatments, which did work wonders, before he was finally
discharged on 04/08/2015.
We are deeply GRATEFUL with gratitude towards our little
donor hero and his family, our most excellent local team and surgeon, our
amazing medical consultant, our ever caring nurses and the floor staff, and our
whole Boston team, our wonderful family and friends who supported us all along,
and last but not least, our heartwarming fellow heart moms and their little
ones who modeled and still are modeling for us, every single day, now then and
ever, with their unbelievable courage and strength, All Beyond Words.
Today’s Travis is a thriving 2.5 years old, chasing his
sister everywhere for the fun of life, loving the moments nonstop. He receives
5 therapies each week and has been making progress in his development steadily.
Thank you for reading Travis’s heart journey. We appreciate
very much your sharing this special path of his with us.
God Bless.
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