Sunday, April 29, 2012

Exit Strategy

Hi friends!

Again, apologies I've been slacking lately on blog and facebook posts. One, Killian has been doing GREAT, so there's not a lot to say. And two, for me personally the last week and next couple of weeks are going to be really really hectic. Bear with me! :) I'm just counting down the days until May 11, when I get to go to Nashville and celebrate Lindsey's first mother's day with Killian...and I'm already crying just thinking about it! :)

As I said, Killian has been great this week! Here's the snapshot:
  • He's been doing awesome off his nitric! No idea when they'll do another echo, but the one they took last week after he'd been off nitric for a few days still showed NO PULMONARY HYPERTENSION! 
    • Side note: I remember praying with all that was within me..."God, we know it's going to be a difficult road. We know he'll most likely have limitations. Maybe he'll have feeding problems or trouble breathing. But please dear Lord, just get him out of the 'death' range. We can deal with difficult. We can't deal with death." This is proof He listens! And everything He does, He does in His time and His way. 
  • He's at 3 on his pressures. When he's at 2, they'll start doing things to test his ability to feed without a feeding tube. 
  • They continue to slowly (very very slowly) wean his anti anxiety med and his methadone. 
  • He is handling the physical therapy well and is getting sort of spoiled by the amount of mama holding time he's been getting. Poor guy went the majority of the first 3 months of his life without being held, so I think he's trying to make up for lost times. 
  • Killian pooped on Lindsey this week. Just wanted to let you know! Lol! 
I know that we all (including you) think about Killian coming home. Every time I hear good news from Lindsey, I have to fight the urge to say, "So, have they said anything about when he can come home?" The reason I fight it is because A) Lindsey has enough pressure on her. I'm not going to bug her about because I know it's all she wants, too. B) I would rather be pleasantly surprised to get that call than disappointed if a date is set and not met. of our favorite nurses did walk Lindsey through, at a high level, what's left before our sweet boy can get home to that crib that's waiting for him. 
  1. He'll be switched to a low flow cannula to replace the vapotherm.
  2. He'll have to maintain a low percentage of oxygen support.
  3. They have to figure out how he'll get nourishment. Currently he has a feeding tube that runs past his stomach to the top of his intestines. 
    1. From what I understand, they'll try to pull the tube up to see if he tolerates feeds directly in his tummy. Many CDH babies have acid reflux and can't handle this type of feeding. 
    2. If he does take it, then they'll start trying to bottle feed him. 
    3. If he doesn't take the bottle and/or has acid reflux, they'll have to sedate him, intubate him and surgically put in a feeding tube/button around his belly. 
    4. Then, he'll have to be extubated and breathe on his own again. If you been following our story, you know that it took 4 times for him to stay off the vent, so the thought of having to go back on scares the poo out of us (well, me at least)
  4. I imagine he'll have to go through some physical therapy in the step down unit
  5. I'm sure Lindsey will have to take special classes and training to operate any equipment he goes home with and what to do in case of emergencies
We've all learned through this situation to wait, and be patient. God alone knows the time and when it will be right for Killian to come home. Just keep praying and believing with us that we'll soon get there! 

One another note, one of Killian's CDH brothers, Jude is already having his second repair surgery tomorrow. He's only a few weeks older than baby K. The doctors haven't been the most positive with Rose and Brian, Jude's parents. Will you please pray and/or send positive thoughts for this sweet boy and his family tomorrow...that God would be with each doctor and nurse, that peace would befall his parents and family, that the repair will go smoothly, heal quickly and all for the Glory of God! You can follow Jude's progress by joining this group: and you can read his full story on his blog: WE ARE PRAYING!!! 

Couldn't leave you without some awesome pictures and video now could I? :) 

Lindsey and Grandma Val petitioned the Governor  of Tennessee to declare April 19th  CDH Awareness Day!  At Grandma Val's work, they had refreshments and played an awesome slideshow of Killian pictures!

Lindsey is doing mama duty, putting together Killian's newest toy.

And here are some videos of him enjoying (the heck) out of it!

I hope you all have a great week! I'll do my best to post on his Facebook page at least once a day. Thank you as always for your prayers, love and support!

xoxox 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 comment:

  1. Blessings to your Little Warrior Man & family!

    I will continue to send prayers & healing thoughts for Killian. Both he & Momma are truly an inspiration to all CDH families.

    I will also send prayers & healing thoughts to Jude & his family.

    God Bless You All!

    Nonna to Angel CHERUB Liam ("The Lion") Anthony Hunt