Sunday, May 20, 2012

The Latest On Killian

We've had some really great weeks over the latter part of April and the beginning of May, so maybe that's why this past week has felt a bit (just a bit) like a punch in the gut.

Don't get me wrong, compared to what we've dealt with in the past, it's a cakewalk. But still enough to give us pause.

Starting around last Thursday, Killian began getting really upset for no real obvious reason. He would cry to the point of exhaustion, seeming almost inconsolable. During these fits, his heart rate would shoot up and he would desat (oxygen levels) from close to a hundred down to the 50's and 60's and stay there for longer than what would be considered normal. He was also getting sick, throwing up multiple times during his fits.

So the guessing game began. Is it withdrawals? Was he weaned off vapotherm too soon? Is there something that's causing him to be in pain?

And why we need your special prayers is, we still don't really know. They are weaning his methadone so slowly that they don't think it's withdrawals and a chest x-ray showed that nothing has collapsed (thank the Lord!).

Now the theory they are working to prove or disprove is it's related to his feedings. Recently they pulled his feeding tube up from past his stomach with continuous feeds to directly in his stomach with feedings for two hours on, one hour off.

They did an upper GI this week and that came back normal, so I guess that's a good thing? Part of me just wishes they could figure it out because at least then we'd know one way or another.

They've talked about doing another test tomorrow that will allow them to watch as he swallows his saliva. Our fear is that Killian, like a lot of CDH babies, could be suffering from acid reflux, which in itself is not too terrible- from what I understand most CDH babies suffer from acid reflux. What we're hoping and praying for is that he's also not aspirating. If he is, we could be heading toward a surgically inserted feeding tube into his belly.

We don't want that if we can avoid it. As I've said before, that means he'll have to go through yet another surgery, be put under and have to go back on the vent. But it's not the end of the world.

The great news is, as of the last couple of days he seems to be acting like he's feeling better. There have been fewer fits and less getting sick. We'll keep you posted on the second test, but in the meantime, here's what we'd love for you to pray about and focus on for Killian this week:
  • Please keep the doctors and nurses in your prayers, and that the good Lord would guide every decision they make and that only kind, not easily defeated nurses will be assigned to him.
  • Pray that they figure out what is making him so upset and that God willing, it's easily fixed.
  • Continue to focus and pray about his development. The speech therapist said that she is concerned about how high the roof of his mouth is from being on the vent so long. 
  • I invite you to join us in speaking life to every area of his body that has been affected by his hospitalization. We want Killian to live a full life!! 
While this all may be just a bump in the road, this already really long road we've been on, we will never stop praising our Lord and Savior for the gift this little boy is to us and so many others. He's going to have such an amazing testimony one day!

I of course can't leave you without sharing something else from my trip to visit last week. Killian had a rough day this day and at one point, he pulled out his feeding tube for the second time that day...which apparently made him pretty happy because he was smiley and happy after that. It also could have been because his night nurse that night was as cute as a button and, well, my little nephew is a bit of lady's man : ). Enjoy!! 

Aunt Layna

P.S. Like his fan page to get the daily updates:
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.


  1. You know what, these are some of the toughest days. I remember that when Dakota was on ECMO, I was strong and steady as a rock! I was positive and while I was scared out of my mind, I was not overly emotional. It was after Dakota was out of the danger zone. When I knew she was coming home, just a matter of when and how, when I started to break down. Every thing that happened from that point on would deeply affect me and scare me. Dakota started desatting briefly when she would eat sometimes. It was determined that she would start to get overwhelmed and would clamp her throat as a natural response to prevent choking. This would cause her face to turn red and her sats to plummet, then they would come back up. I have to tell you that those alarms scared me more than the alarm on the ECMO machine when they couldn't get the flow they needed. Many, many prayers that they figure what's going on out and that you have a good week and that the light of the end of the tunnel gets brighter and brighter. Hugs!!
    Mom to Dakota 12-25-2008
    RCDH survivor

  2. Thank you so much Jennifer!!! It's great to know that we're not crazy for feeling like this right now. What a blessing your comment has been to me today. :) -Layna