I started following I love Liam Lyon right after he got his trach ( I have a passion for trachies since Mighty Z had one) I was amazed by this little cubs fight to survive and the family that surrounded this Miracle. I hope it touches your heart like it touches mine.
February 18, 2011 – It was a day
like any other – and then the world turned upside down. In my mind I have likened the news like
watching the events of September 11 unfold.
Whitney was supposed to have a baby shower that weekend. Liam wasn’t due for another 5 weeks but he
wasn’t waiting another minute. I
sometimes wonder about that because it just happened a special doctor was on
duty that quickly recognized Liam was in trouble. He was immediately supported and transferred
to Tulsa from Ft Smith – the first of many flights in his short life. And Whitney left the hospital with Grandma
Nanci and they drove – just hours after giving birth.
I remember the call to me in
Houston – the first time in my life I had ever heard of a condition called
Hypoplastic Left Heart Syndrome or HLHS.
I could hear the fear in Nanci’s voice.
I could feel the fear in me as I read about this condition trying to
understand what they meant by palliative surgeries and comfort care and heart
transplants. I didn’t want it to be true. Your head swims and your heart breaks and
then you have to try and regain control because the fight has just begun – and
you will need all your strength. So you
decide that hope is your only course and a positive outlook is the only one you
will permit. And you believe.
Liam went from Tulsa to Arkansas
Children’s in Little Rock where he spent most of the first year of his
life. Nanci works in adult cardiac cath
labs so she had a good feel for what was happening. Liam had repeated open heart surgeries –
sometimes his chest was left open – he was hooked up to what seemed like a
million lines and wires and banks of syringe pumps. We became fluent in a language no parent
should ever have to learn. We slept in
waiting rooms and in hospital chairs – we met other parents – we celebrated
with some and we grieved with others.
When he was just 5 months old, it was apparent his palliative surgeries
were not working. He had the Norwood and
the Glen – but he was only improved for a few days and started to decline. Nanci had to head back to work and when she
left, she wasn’t sure she would see Liam again.
Almost as soon as she got home, Whitney called and said she “got the
call” – which in transplant families means it’s your turn. Nanci had a friend with a small plane fly her
back that night and Liam got a new heart.
The waiting room was filled with friends, family, and prayers – again it
was a time to grieve for another family – and there was a soul engulfing fear as
you realize the enormity of the situation - that you were having your baby’s
heart removed and replaced with another.
But when they said he had some through with flying colors we were so
filled with hope – we knew it would not be easy – but he had a chance!
He looked better within
days. He was pink! But sometime after this, they began to realize
he had some other issues like bronchial and tracheomalacia. He was also very drug dependent from the
constant sedation and chemical restraint.
After a few weeks he came off the ventilator for the first time in his
life. Up until then he had always been
taped up and sometimes even in restraints.
He was such a fighter. He had
this incredible smile – to be sure some days he made you work for it! And he had the most enormous soulful and
penetrating eyes – and he talked with those eyes. And he loved to hold hands – especially with
his grandma Nanci who never let go. He
started having fluid retention problems and abdominal swelling. And we found out that the drugs and the
bypass and a number of things had severely compromised his kidney
function. And the repeated heart caths
had cause an occlusion of many, many veins and most importantly his inferior
vena cava – the main venous drainage for all parts below the liver. They speculated this was the cause of the
fluid in his belly that would ultimately back up and make him swollen all over.
They “tapped” his abdomen and it gave
him some much needed relief but it did not fix the problem. I remember a week Nanci and I spent with him
in Little Rock in the step down unit.
Whitney and Brody and Cheyanne got some much needed family time and we
got some very needed quality Liam time.
We took turns holding him and rocking him. It was a great week – it was the best
week. He was transferred back to Tulsa –
which was closer to home and Grandma Nanci.
He had a window of time around Thanksgiving where he was well enough to
go home and a very careful and nervous Nanci drove Whitney and Liam home. There was a welcoming community with signs
and balloons and fire trucks. It was so
touching. There were so many tears. The local paper even covered the little
Lyon’s homecoming.
He was not able to stay home long
before he had to go back to Tulsa and from there to ACH again. The word from ACH was his venous blockage was
so serious; he would not be able to survive.
Whitney and Brody made the decision to get another opinion. We would find out, his is not as easy as it
would seem, or as it should be.
Eventually he was transported to Boston Children’s Hospital. They tried to open the vein but were only
partially successful. He was sent back
to ACH, and then again back to Tulsa.
Back in Tulsa they told us we
needed to let them place a trach. It
took a while to get our heads wrapped around that – but eventually we did. We hoped he would only need it a few years at
most. It was a hard decision to have
this done, very hard. But he was able to
have all the stuff off his face again – finally.
In April 2012 Liam had become so
swollen in his belly and then all the other tissues that he was rigid. The doctors there would not consent to
tapping his abdomen to relieve the pressure.
We begged and pleaded – we cried – we consulted with one and all of them
and they would not. They told us to call
the family in – so we did – and we called upon the prayer warriors. He was baptized and we brought all his little
and big cousins in to meet him in person.
We were devastated. And we were
broken. And then – Liam started to turn
around – very slowly his tummy started to decrease.
He improved a while – and in July
we celebrated his first ‘heart birthday’ with an amazing outpouring of support
– it was themed “Liam’s Day at the Zoo”.
But Liam was not doing well – he was swollen and he had some terrible
skin issues going on. We tried everything
to help his skin but were told it was related to the excessive swelling and
then the drying effects of the diuretic.
No one really focused on the little black spots he had started to
develop. No one knew those spots would
ultimately consume him and end the much too short life.
Since before Liam went to Boston,
we tried to find doctors and hospitals that would consider taking him as a
patient. We talked directly to Lucille
Packard in California, we talked directly to Boston Children’s, and we searched
for 1 doctor to accept Liam as a patient in Houston so he could be around
family. We found a doctor in Houston,
Dr. Benjamin Ho, but still Texas Children’s wouldn’t accept him as a
patient. But we finally found what we
believed was the miracle we had prayed for - the miracle was Dr. Morales in
Cincinnati. When we were down to our
last hope, the doctor’s at Cincinnati said they would try. They flew him there and tested him and we
were so hopeful - so very, very hopeful.
But the black spots were bigger
and erosive and the belly was bigger than ever – and the tests we thought
showed us a glimmer of hope – well, we misunderstood. The tests showed that the venous occlusion he
should be able to compensate for – the black spots on his skin had worsened –
and he lost the tip of a finger and we knew.
He had a systemic fungal infection – bad in most patients, but often
deadly in transplant patients. Once you
lose the overall integrity of the body’s greatest barrier to infection in an immune-suppressed
patient, you have greatly decreased your odds of survival. The skin couldn’t support the peritoneal
dialysis tubes; all of his life support was maxed out. God called him home and we shattered in a
million pieces. It was devastating and
unbelievable – and something no one should have to go through. Somehow we got him home and all of us home
from Cincinnati to Oklahoma. And
somehow, we planned a baby’s funeral.
With a tiny casket, and songs and pictures for videos, a hundred
decisions – I don’t know how we got through it.
We then celebrated Liam’s life and courageous battle with 400 of our
closest friends and family and thousands more online for the “miraculous soul”
that he was – and we laid the cub to rest in quiet country cemetery in Cameron
– the balloons and butterflies we released have been symbolic for us ever
since. The entire community was so
respectful and loving – we will never forget.
You go through a range of
emotions with a child this ill. Most
days you are terrified. Some days you
want to walk away and never come back.
Some days you are so angry this happened to your child and your
family. Some days you are incredibly
thankful for the caregivers and some days you hate them beyond measure. Some days you are perfectly reasonable and
the next day you are clinically insane.
The crazy part is its all normal but there is no “help” at many
hospitals for families – only for the patients.
If you are staying there at the hospital you don’t really ever sleep and
if you are away, you live in fear of that one phone call. I started every day like a lot of people,
checking on the cubby. Many days you
wonder how you can possibly ask your child to undergo even one more
procedure. But when it comes down to it,
if there is hope, you have to try. And
when it was over – it was a mix of profound sorrow, sadness and an unimaginable
grief – and a sense of relief. I am sure
many people will take issue with that comment but it is a relief to know he is
not suffering and not bedridden – that he is finally out of the hospital and
out of that bed. The old adage hindsight
is 20/20 has never been more true – if we knew how it would end for him, would
we have done any more than comfort care?
Maybe, but your heart and soul join together in a strength you cannot
imagine and you believe with everything you have that together you can overcome
all of it. We believed and nearly 95,000
people believed with us.
I once remember my mom telling me
that she would give up everything they owned if she needed to, just to save one
of her children. Well it is true – you
will. Whitney and Brody lived the way
many families have to – one hanging on to a job, and the other living at the
hospital. Cheyanne saw her mommy as much
as possible but spent nearly 18 months in hospitals and cities all over the
US. Grandma Nanci ended up quitting her
job, selling her home, cashing in her retirement, and terminating an eight year
relationship – you see, she had a grandson and a daughter to try and save. We, as a family, all incurred enormous debt
that will take us years to recover from.
But we will recover. We would
give it all for one more smile and one more little grasp by that tiny fist.
In Liam’s memory, we have started
a foundation to help other families faced with critically or chronically ill
children. We hope to educate about heart
disease and organ donation. We hope the
foundation will keep his memory alive and inspire others to fight like Liam –
and Pierce and Glory, and so many others.
Thank you for reading about Liam
–I love you Liam Lyon, Aunt Susan
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