Sunday, January 29, 2012

"So he's going to be okay right?"

A coworker of mine asked me this week how Killian was doing. After I rattled off the latest news of that day (typically includes me telling people what his blood gases are, if he's peed or pooped, etc.) he said, "So, he's going to be okay right?"

I haven't quite figured out how to answer that question without sounding like the ultimate Debbie Downer. As his family and people of faith, we know he's going to be "alright" because no matter what happens we believe God has this on lock down! But the truth is, Killian still has a very very long road to recovery. And while we celebrate EVERY victory, the fact of the matter is Killian is still a very sick baby.

I say all of this with two goals in mind.
  1. So you won't let up praying for him and/or sending positive thoughts his way. We've said it before, but we know beyond a shadow of a doubt, your prayers/positivity make a difference! 
  2. And to bring more awareness to what thousands of other families are going through right now, not only for these precious newborns in their first months of life, but for the rest of their (sometimes short) lives. Many survivors of CDH deal with medical issues ranging from respiratory issues and hearing loss to digestive complications and development problems. 

If you feel led, take two minutes to sign this this petition to increase research of this debilitating condition! And then share it with others! 

Highlights of last couple of days:

  • The infection is gone! Praise the Lord!! They are going to keep him on antibiotics to be safe. 
  • Still no more seizures! 
  • His blood gases have been coming back okay. 
  • He made a poopy!!! Might seem gross to celebrate this, but it means his organs are functioning the way they should. 
  • They are talking about putting him back on the oscillator :(. Since putting him on the regular vent, he's been "leaking" from the tube in his throat and he might not be getting all of the oxygen he could be getting. They don't want to increase the size of the tube as it could do more harm than good. We're trying not to view this as a step back, but rather as it's just giving Killian more time to get stronger so he can get back on the regular vent. 
  • Before moving back to the oscillator, Lindsey will get to hold him again (hopefully today)!! 
  • They are doing an echocardiogram to check the size of his liver and heart. Please pray that they both look healthy and not strained!!
Thank you all so much for reading and caring! 
Aunt Layna

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. The paypal donation account was set up by a friend, Liz Wolfe, whose name and email appears on the PayPal page. Liz manages all donations with the support and oversight of Killian's aunt, Layna Lambert Dugan.
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.

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