He's a REAL Boy! But We Still Need Prayers!

It's been six LONG weeks since I've seen Mr. Killian Kayne in person. I of course bug Lindsey (his mama/my sister) incessantly for pictures and videos, but nothing compares to seeing this little guy in person. He looks like a REAL baby! I don't mean that to sound harsh, especially since you all know that even with all the tubes in the world, he's still the cutest kid on the face of the planet!

But to walk into his room last night and see him, sans ventilator tube, art line and drip medication tree with full puffy cheeks and perfect pink coloring.... well it was like a little hug from Jesus! :)

Another thing that I'm blown away by is how less breakable he seems. Before, even turning him to an different side was an event. We had to ask a nurse to turn him, hold every line and then wait to see if he tolerated it. Not anymore! Lindsey herself just moves him around, plays with his hands and feet and readjusts him with no hesitation. It's incredible.

And my goodness, I would like to track down the person who invented mobiles set to music and give them a big smacker! If we could all experience a fourth of the joy that little boy gets from watching his mobile (constantly trying his best to get that hippo) the world would be a better place.

And while allllll of this is wonderful and we're giving God all the praise every step of the way we did get a good dose of reality from one of our favorite nurses, Erin, today.

Here's what's happening:

• Killian has been breathing on his own for five full days! And doing GREAT!
• He's now down to receiving methadone about every 12 hours instead of every eight and it's smaller dose. He gets a bit upset around hour 11, but NOTHING like he did coming off morphine.
• They are bringing down his nitric oxide by one a day until he gets to five. He's at seven today.
• Some nurses are reading his last echo and saying they think his pulmonary hypertension (the inability for the lungs to oxygenate the blood and cause his heart to overwork) is GONE!! That's right- GONE!

But..............

Killian is quickly approaching what could be a danger zone. You see the nitric oxide is primarily what is helping his pulmonary hypertension. And they are telling us the wean from 10 to nine to...to eight...all the way to five is no problem. The extremely tough part is going from five slowly to zero.

She said that the battle with pulmonary hypertension is like this: picture a 400lb sumo wrestler on one side and three girls on the other (there were three girls in the room when she was painting this picture). We may gain a little bit of ground and then the sumo wrestler gets more. The important part is that we don't lose too much ground and eventually where him out so he'll give in and go away. She wanted us to be prepared for the following during that crucial time from five to zero:

• He could go in "pulmonary hypertension crisis" which is what we've seen in him before, when he clamps down and essentially cuts off oxygen to his organs.
• His pulmonary hypertension could come back :(
• And if all of this happens, he could need to be reintubated (put back on a ventilator)

So prayer warriors and positive thought givers we must remain vigilant and steadfast in our joint prayers and healing energy that this won't be the case for Killian!!!

According to my calculations, we'll hit that mark Sunday or Monday where things could go sideways. We invite you to stand with us in belief that Killian's transition off nitric will be an easy one!

More stories from the frontline soon! I promise to get pictures and videos up soon too! Love you all bunches! Happy Easter Weekend! We serve an AWESOME God!



Hugs from NASHVILLE!!!
Aunt Layna 

P.S. Like his fan page to get the daily updates: http://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876
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Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

 

More about CDH from CHD Support:

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.