You see, it was only two short weeks ago that doctors were telling Lindsey and our family that Killian was losing his battle to CDH...quickly. One doctor gave him a 5% chance of survival, applicable to the following 24-48 hours. And here we are....
Two full weeks later, Killian has not only continued to thrive and improve, but has also continued to bless SO MANY with his tenacity and all out adorableness :).
Here are some of the positive things that have happened since my last post (although I want to, I'll refrain from adding an eclamation point to the end of every sentence):
- He continued to come down on ventilator and keep his sats high. IN FACT, today he got all the way down to the lowest setting they'll take him on the vent for a while and stayed in the 99-100 range. :::I can't stop myself:::!!!!!!!!
- They put in a feeding tube. This is a huge step because...
- With the feeding tube they can now give him medication for his pulmonary hypertension which will give his tiny, little, overstrained heart a little back up.
- He got himself a head to toe wipe down...by a cute nurse. PLAYER! (this is big b/c CDH babies don't typically tolerate "being messed" with well)
- The docs are talking about doing surgery later this week to finally close his repair incision (where they went in and rearranged his organs and repaired the hernia) because things are healing well.
- The infection is GONE. To give you an idea...the number relating to the infection needed to be between 10-20. Killian's at its worst was 220...that's right, 220!!! It is now -1. Praise praise praise the Lord!
- Lindsey got to hold him again!!!!! (that totally deserves some exclamation points)
Where we need you prayer warriors/visualizers/positive energy givers to focus:
- Little man is experiencing some difficulty digesting. This is normal for CDH babies as their organs have been rearranged, irritated, etc. But we know our guy can power through this like everything else he has so far.
- Continue to focus on a strong heart. A lot of CDH babies lose there battles not because of poor lung function, but rather because their hearts give out (essentially).
- Remember to think on/pray for the nurses and doctors who are giving him such amazing care (even the one who gave him a 5% chance!).
- Platelet production. Wish I could add something witty here, but I'm still trying to grasp this one. :)
- Blood clots in his brain to dissipate.
We also like to take a moment and ask that you pray for the families of so many other CDH babies, some of whom have lost their lives this week. Every time we hear that one of these Cherubs has earned his/her wings it takes our breath away. Every single nanosecond that we (AND YOU) get to spend loving Killian on this earth is too precious to wrap our minds around.
It's a long road for Killian. But he's still here. So take that 5%!!
Hugs and love to you all,
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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ReplyDeleteWhat a handsome little miracle! It's so nice to see him in his mom's arms again.
ReplyDeleteContinued prayers for Killian,
Lisa, mom to LCDH survivor Ramsey