So today was Killian's heart ultrasound to see how his pulmonary hypertension is doing. Of course we were in constant prayer (with a lot of you) for a change. The results always take forever to get back, but Lindsey called earlier to say that after the ECHO, they reduced his blood pressure medication. I tried not to get my hopes up, but we took that as a good sign...wouldn't you?
Unfortunately, when the doctors came in, they told Lindsey that his PH was still moderate to severe BUT, the doctor seemed perplexed. "I'm not quite sure what is going on, because his heart looks normal (NORMAL!!). Also, a baby's heart wouldn't be able to function on only 40% on the vent and have severe PH?"
The second Lindsey told me this, I felt this, "Because I AM protecting his heart." :)
Scratching their heads in disbelief, they concluded that there has to be a disconnect between what the ECHO is saying and what is actually happening. We're believing in the reality and the facts which are, that Killian has successfully handled being brought down on the vent, that he survived three hours last week off the vent and that this little baby is not giving up!
So here's what's next for Killian Kayne:
- Over the next two days, they are going to wean him off what little bit of blood pressure medication he is still on.
- After that, they are going to try and wean him off the Nitric Oxide (which is used to treat PH) and see how he does. He can't go home on Nitric. Also, they can't do an MRI while on Nitric and they want/need to see what's going on with those blood clots.
- Once they see how this goes, they'll check his PH again and then potentially try different medication if they see his heart struggling at all.
We are cautiously optimistic that Killian and the Big Guy Upstairs are yet again making medical miracles happen!
Other highlights (good news just keeps comin'):
- They are upping his calorie intake (not the feeds).
- A week or two back we mentioned drop foot, and them having to bring in physical therapists...but Killian said, "Nah, I'm cool. Just gimmie a blanket wall to push my feet against and I'll be good." It's no longer a concern of theirs for the moment :).
- He hasn't had any more seizure/tremor activity since last night, so no EEG today!
- They continue to slowly bring down his morphine and his Versed (agitation drug)!
Dear, dear friends, thank you from the bottom of our hearts for your prayers and positive vibes. Killian is 7 weeks old today! That's 49 days longer than many doctors said he'd be with us, and we KNOW that you've had a hand in that. Many of you believed for a miracle when we no longer could. Here's to thousands and thousands more days with him!
And now for some eye candy!!!
1 Thessalonians 5: 18
In every thing give thanks: for this is the will of God in Christ Jesus concerning you.
Three days until I go to Nashville!!!! Hugs!
Killian's Social Media Coordinator~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.