Thursday, February 9, 2012

CHD Warrior - Liam

First let me say I adore this guys cheeks!   Liam is another CHD Warrior that Sugar Pea and I follow on a daily basis.  Sugar Pea talks about Liam to all her friends like he's just the little boy next door.

Liam was born February 18, 2011 to Whitney and Brody Lyon in Ft. Smith, Arkansas.  It wasn't known until after Liam was born that there was a problem. Thanks to the doctor's great skills, Liam was quickly diagnosed with Hypoplastic Left Heart Syndrome, which is fatal if left untreated.  He was transferred that evening by Life Flight to The Children's Hospital at St. Francis in Tulsa, Oklahoma. The doctors spent the next week trying to decide which would be the best route to take and decided that he needed a transplant instead of the 3 normal surgeries for HLHS (Norwood, Glen, Fontan).  He was then transferred to Arkansas Children's Hospital in Little Rock, Arkansas. 

The doctors there decided that he should have surgeries to try and make his heart work as long as possible.  He had the Norwood, but it wasn't working quite right and they had to operate again. It was becoming apparent that the surgery didn't go as they expected and he was then listed for a transplant.  

On July 25th they got the cal that there was a heart for Liam.  Somewhere a family chose to give other babies a chance to live during their time of grieving.  For the 5th time in 5 months he had another surgery, his long awaited transplant.  

Liam was able to go home on 11/22/11 for the first time in his little life!

Just after Christmas Liam's family got some difficult news.  I'm coping and pasting this from Liam's Facebook page because they can explain it better than I can.

Its the last day of 2011. We have had some difficult news this week - the kind of news that makes your head swim. Liam has had the fluid collecting in his belly - he has had two seperate episodes that required a "pigtail" to drain the fluid. In investigating this, they were doing another heart cath and decided to check "south" of his heart - when the did, they discovered that the inferior vena cava (the large vein that drains the lower part of the body and returns it to the heart). They knew there was some issue with this vein before now, because they used to gain access to his heart through his groin - and thread it up through the inferior cava. At some point, they couldn't get through there anymore and they had to gain access through his neck (and I gues the superior vena cava). The inferior vena cava is just not functional any more - from the multiple heart caths - which HAD to be done. We sure are not blaming anyone for this - it HAD to be done. The problem is now, they say at Arkansas Children's, they have never seen this and there is nothing they can do about it. He has to develop what we call collateral - meaning collateral circulation to provide venous drainage and return to the blood from the body to the heart for oxygenation. We were even asked if we wanted to put him through these episodes - as nothing can be done. If you remember, before he got his transplant, he was having palliative surgeries to sustain him and he was developing collaterals so fast, they had to be coiled and recoiled to make the blood flow where it was supposed to. That is a higher pressure area - and that induces faster collateral circulation - but we know the boy is a collateral making machine.

Liam is now in Boston where hopefully doctors can help him with this problem!

If you're not already a Liam follower, check out his Facebook page for recent updates and picture of this adorable little man and his cheeks!

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