Saturday, March 9, 2013

I Love Liam Lyon

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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Wednesday, March 6, 2013

Fear Factor

Fear is something that is hard to navigate around when dealing with this ‘new normal world of special needs,’ especially when doctors are telling you that your little miracle has little to no chance of living.


I know that when Mighty Z was born, the doctors had given her less than a year to live at the most, and they, at times,  are still shocked to see her alive, twelve years later. One thing I experienced many times was that doctors do not know what to make out of these very rare diseases. There is literally no handbook or “how to,” so the doctors go through trial and error and speak on the side of  worst case scenario when  talking to the parents of special needs children.


However even though Mighty Z has made it to twelve doesn’t mean that fear doesn’t come slinking around or that death doesn’t try to knock on my door. I have, in fact, been dancing with both of these evil fellows for twelve years and still I sometimes wake in the middle of the night in a cold sweat because fear has managed to slip into my dreams.


So what do you do when fear starts lurking around? Well, I will tell you what I do, I jump out of bed and go check on Mighty Z and then I breathe.  I breathe through that fear and I quote Isaiah 41:10 (ESV) “Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you.” And I take another breath and let it out, slowly.



 Sometimes that helps, and sometimes I just stare at her monitors for the rest of the night and pray over her. Is that a healthy way to handle fear? I don't know but it is they only way I can cope . Sometimes that old bedfellow, fear, tries to stay with me and linger on me like smoke. It is hard to shake fear once  it sinks its talons in you…it is even harder to push it away.


While sometimes my weeping may last through the night, joy usually comes in the morning. The joy in the morning when Mighty Z opens those big beautiful eyes never gets old. To make it through another night is a mighty miracle in and of itself.


I spend the next daypraising Him for my abundant blessings, and for the joy both of my girls bring me -- regardless of what this world throws my way. Sometimes, during those nights when fear slips in and death starts knocking, and I feel that I am just in the middle of a little storm,  I find that I am still praising Him. 


 edited by Linda Kruger
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