The last couple of days have been rough as Killian has been going through a lot of withdrawal symptoms from the morphine. On top of that we didn't the best results back from his head and heart ultrasound...BUT I say all of this with a smile on my face because we have lots and lots to be thankful for.
Highlights:
- Even though the pulmonary hypertension came back "unchanged" they also said it was moderate. We can live with and be thankful for moderate!
- Poor baby was experiencing a lot of withdrawal symptoms, but luckily this is A) not unexpected and B) "easily" fixed. I say easily because being on morphine is not what is keeping him in the hospital. So contrary to what I posted this morning, they are going to hold off on the methadone and rather just try to ween him off a bit slower.
- Once they upped his morphine a bit today, he stopped throwing up and his shakes, sneezes and other symptoms eased up.
- He's back up a little on the vent, but still down to 49%!
- He's still on the blood thinnners for the clots, antibiotics and one blood pressure medication.
- HERE'S THE MAJOR NEWS: For every 60 breaths...Killian is taking 32 on his own!!!! I'm on cloud 9 over getting this news today!
- And lastly, earlier this week, for the very first time Killian got to lay on his tummy for a little while! Isn't it the cutest little back you've ever seen?!
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BABY GOT BACK!
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The back of his adorable little head! Lindsey said he has a mullet :)
Lastly, Killian sent this Valentine to his CDH girlfriend Avarey Grace. It says,
"Roses are red, violets are blue, sending my love from this NICU to you!
Happy Valentine's day Avarey Grace! Be mine?!"
Happy Valentine's day Avarey Grace! Be mine?!"
Please prayer for Avarey and his family too!! She was born last week and is still fighting hard for her place in this world!
Tomorrow they'll be drawing a blood gas and testing for infection. Please continue to pray/send good thoughts for his heart, the blood clots, withdrawals and no infection!!
Aunt Layna
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.
Happy Valentines Day Aunt Layna! My name is Kristen Simmons and I've been following Killian's blog religiously and anxiously awaiting each new development and praying faithfully for his recovery.
ReplyDeleteI am truly amazed/touched/inspired by you and your families (especially Killian's beautiful mama's) faith. I have shared your blog post on a regular basis to my friends and family and I just had to write you to tell you something amazing that happened tonight.
My grandmother is Catholic and my husband, one year old son and I are all staying with them while we try to get a house. My grandmother was going to a healing mass tonight and offered to stand in proxy for Killian since she knows he's been on my mind.
She had a list of things she needed to pray for, including herself and her shaky health but she found herself focusing on sweet Killian. She was in the middle of her prayer when she tells me that the Lord spoke to her. He told her, "I will take care of that baby. I am there. I will take care of your needs." My grandmother has had some amazing things happen to her and is very strong in her faith. I too, have felt that I've heard the Lord's voice (just once). I believe so strongly she heard this.
A few other amazing things happened to her tonight during this prayer service but she came home and you could see in her eyes she was touched. She was so happy that while God addressed her at all, he addressed Killian specifically. I hope that while I know you guys are strong and courageous, perhaps you can stick this great thing in your pocket for a rainy day. There is a household here in California praying for your beautiful baby and while we've always known God has been with you and watching over you- he most definitely is on top of things. What a joyful message! Praise the Lord!!
God bless you and your whole family. Much Love from the Simmons family and I look forward to your next post!! :)
Kristen, I woke up this morning, read this and then proceeded to immediately call every member of my family! I keep using phrases like "words can't express" and "we're blown away" but I honestly can't find any other words to describe the magnitude of our wonder and the depths of our gratefulness. The fact that you and your precious grandmother (who sounds a lot like a couple of my grandmothers!) would take the time to pray over our little guy is nothing short of an honor. Pair that with the fact that the creator of the heavens and earth SPOKE to her about Killian...I'm blown away and there are no words! Your grandma will be in our prayers for health and wellness! Love right back at you Simmons family!!!! -Layna
ReplyDeleteThank God, Praises to the Lord!
ReplyDeleteBlessings come in all shapes, sizes & forms!
This Little Warrior Man continues to "wow the crowd" that wakes each day to read the updates.
Continued prayers & positive vibes for Killian, his Momma & family.
Our precious Angel CHERUB Liam "The Lion" Anthony Hunt is roaring/cheering from above.
Nonna in Vermont
Your ability to hold positive energy in the midst of a tough time is inspirational - that is what will get you through. Hugs to you all.
ReplyDeleteCorinne
mama to Samuel, lcdh survivor, Feb1/11