Well guys, I had a blog entry all written out yesterday morning, ready to post. It was a beautifully written piece (if I don’t say so myself) about how we were of course disappointed that Killian’s echo Tuesday showed no improvement in his pulmonary hypertension, asking for continued prayers, etc.
Good thing I got to THROW THAT POST OUT after getting the call I did yesterday afternoon!!!
Just to recap in case you’re not on his Facebook Fan Page.They did the ECHO on Tuesday morning and gave Lindsey the results Tuesday late in the day that there had been no improvement from the last one…and that last one, had been worse than the one before. We were trying our absolute best to be thankful that it had held steady. A nurse had told Lindsey that once pulmonary hypertension starts getting worse, that it’s pretty much downhill from there. So you can imagine our utter devastation the day it came back worse.
When she called to tell me the “unchanged” news, I gave it all my might to cling to a bit of joy that it had remained the same, though it certainly wasn’t the outcome I had been praying and crying out for. And after taking a few moments (ok-hours) to wallow in my sadness, I gritted my teeth and took it to the Lord. It sounded something like this….
Heavy Sigh, “Ok, God, I know you’ve got a plan for Killian. That the hairs on his head are numbered. That you never leave his side. And that it will be in YOUR time, not ours, that his fate is revealed. Give Lindsey, me and everyone else who loves him the grace and patience to wait upon you, Lord. We are thankful for the opportunity to lean into you more.”
Fast forward to Wednesday morning (and me still feeling pretty deflated)…Lindsey said, “I’m getting to the hospital as early as I can tomorrow and I want to be there for rounds to talk to the doctor myself.” Hours ticked by and then finally, he came.
He told Lindsey he had some good news. That everyone reads an echo differently, but after he reviewed it and compared it to all the previous ones, that it was his conclusion that KILLIAN’S PH HAD GOTTEN BETTER!! And this doctor is ready to kick it up a notch with Killian’s treatment!
Miracle number 5,498 for Killian Kayne Lambert!! I wish that kid was old enough to buy a lotto ticket! We are over the moon about this news! Now, this by no means means he’s out of the woods yet, but it is the answer to hundreds, if not thousands of prayers!
Come and see what God has done: he is awesome in his deeds toward the children of man!
We hope you don’t get sick of hearing us say thank you, but if you do, too bad! Cause I’m gonna keep screaming from the rooftops how much we appreciate every.single.one.of.you who have taken even a nanosecond to think about Killian, to pray for him, to visualize his healing. Folks, together we’re putting some good stuff out there in the universe!!
Here’s what’s next for Mr. Man:
· They are weaning his versed (anti-anxiety) drip this week with the hopes of him being completely off of it by Friday. This is huge because it’s his last drip med and just one step closer to that crib he has waiting for him at home.
· Today they’ll start him on steroids to help him grow and hopefully get stronger. Little guy is already almost 12lbs! Lindsey and I have made plenty of jokes about the fact that he’ll have “’roid rage”. Our maturity is even more evident when we pair these jokes with our comments about him being on Viagra :)
· He’s doing so well on the vent that they are talking about extubating (taking the breathing tube out) on Saturday! Our dad, Grandpa Garry, and our Second Mom (we don’t say step-around here) Kerry (Ker-Bear) will be there this weekend in Nashville. So hopefully they get to hear that little stinker cry like I did a few weeks ago!
Here are your prayer/positive thought assignments:
· They are going to begin weaning his nitric. Last time they weaned his nitric is when the PH test came back worse. BUT that was also the same time that he experience the pneumothorax brought on by withdrawals from the morphine. SOOOOO, pray/send positive energy that as they wean the nitric this time, his lungs begin to oxygenate his blood the way they’re supposed to so that his tiny heart isn’t working as hard.
· PRAY THAT THIRD TIME IS A CHARM on the extubation. You know they tried once and he lasted about 3 hours breathing on his own. Then, little warrior extubated himself while I was visiting (show off) and lasted nearly 3 days. Let’s join together in believing that this is the FINAL TIME. We can kick that vent to the curb!
· Keep Grandpa Garry and Ker-Bear in your thoughts as they make the 9 hour drive to Nashville this weekend.
Sheww! I know this was a long post, but one that I am happy to have written again! We are so incredibly blessed. Oh and Lindsey got to hold him yesterday again (I think this is the 5th time!) for about 3 hours!
|I love sleeping on mommy's chest!|
XOXOXO From Aunt Layna
p.s. Lindsey's job interview went well and the lady said she'd be letting her know something this week! Fingers crossed that if it is the right place for her, they'll snatch her up!
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.