"Well," she said, " I understand that he is still a very sick baby. I understand that he is still on a lot of support." She continued to rattle off the cold hard facts. After realizing that she did in fact grasp the severity of his condition, they went on to very gently remind her that since there has been no change in Killian's pulmonary hypertension, that they are still giving him a low chance of survival.
Treading lightly, as if she might break (which I should know better by now- she won't) I asked her what she said? How was she feeling? "I told them I'm not giving up on my son. That I'm a person of faith and I know my God has this under control. I told them that I respected their opinion." Then she giggled, "Annnnnnnd I basically told them to shut up in the nicest way I could." :)
One of our favorite nurses, James, explained to Lindsey that the doctors (brilliant, wonderful men and women who we adore and are so thankful for) tend to see the really big picture. And in the larger scheme of things, they know his heart is under tremendous stress.
But what WE see are the tiny improvements daily and the glimpses of hope- ticks down on his ventilator, decreases in medication, opening of precious eyes that search for mama. Plus, when we thought we were losing him a few weeks ago, Grandpa Garry promised him a jet ski, a four wheeler and just about every other motorized vehicle on the face of the planet to stick around. He pulled through that, so we're thinking Papa G needs to start saving!
So with Valentine's Day upon us, we're asking that you pray and/or send positive thoughts for a STRONG HEART and that tomorrow when they do another echo to scan his heart that the pulmonary hypertension is not only better, but that IT IS GONE! Believe it. Praise God in advance for the miracle that is going to happen tomorrow!!
Psalm 28:7 The LORD is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoices; and with my song will I praise him. (Thanks Tricia for this verse!)
Highlights of the day and prayer/positive vibe requests:
- Killian is down to 33% on the vent and still satting in the high 90s-100!!
- Feedings continue to go well. He's at 33 cc's!
- No seizures in the last few days!
- They are talking about trying to bring down his morphine dosage! While this is great news, what you might not realize is that a lot of CDH babies become physically addicted to the pain medication and will often go through withdrawals. This can be very uncomfortable for them and for those who love them to watch. Please pray that as they start this process that Killian doesn't encounter ANY of these problems.
- They are also going down on his versed, a sedative, because he's been less agitated.
- Again, tomorrow is the ultrasound of his heart. We need you to pray for and meditate on the improvement of his pulmonary hypertension. It's the next big step toward getting our guy home!!
- Also as equally important as the heart check, tomorrow they will be doing another head ultrasound, too to check on the blood clots in his brain. We need those to be GONE!!
Thank you all as always for your encouraging words, for caring, for praying and for reading.
Much love from Aunt Layna in Florida!
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.