Ryan is doing really well. He is being weaned off some of his sedation meds so is getting more alert – and fun! He smiled at several times on Monday and was actually awake for more than 30 seconds. I even saw him playing with his hand, just like old times.
He is still a little swollen from the Glenn procedure. It usually takes about a month for the body to adjust so this is normal. They sutured his breathing tube to his septum (yes, it sounds painful) to eliminate the need for tape across his nose and face. IT also seems to relieve some of the pulling the tape created. It makes the tube look weird on his face – maybe because I’m not used to it; or maybe because I’m not used to seeing it go directly into his nostril. It’s also a great break for his skin since there has been constant tape on it for six months.
He is back on CPAP trials with plans to try extubation next week. Not sure how this will work out – they typically talk about short-term plans (as in, what they are doing today), so I’m not sure how much stock to put in a plan that is for seven whole days away. It would be nice to get that tube out of his nose though.
Other than that, they are weaning down his meds. He is off three of the continuous drips (I think he has two to go), but still can have those particular meds in bolus doses as needed.
He is tolerating his goal feeds on a continuous drip. We didn’t realize how big a deal that is. The attending told me last Friday that a lot of babies who’ve had omphaloceles put back in struggle a little with their gut at first. But Ryan did great we are grateful for that.
Here is the most recent picture of him:
(c) 2016 Leighann Marquiss
Comments (25)
Leighann!
I’m so glad to hear Ryan is doing fantastic! Praise the Lord for that! 🙂 I’ve been praying for him and will continue to pray for him and your family. His picture is too cute! Brings a smile to my face because he’s looking at the camera as if he is saying “Hi!” 🙂
How are you doing, have you gotten a chance to do any exercises lately? 😉 Have a great day! <3
He is soooo beautiful!!!!!!
Doula Mama
awww cute little boy
Such a cute little guy. I’m so glad he’s weaning off the meds and tolerating his feeds!
Every time I see a picture of him, I just want to pick him up and give him a big hug. I don’t know how you hand him being so tied to machines.
So good to hear he’s doing well, and great to see a picture of him awake!
He looks great! I’m so glad to hear that he’s doing so well! We are always thinking of Ryan and your sweet family.
He is a beauty, look at those bright eyes! I can’t wait until you can take him home without all those tubes!
Is his hair as red in person as it looks in the pictures? he looks so handsome. Keep us updated about the CPAP trials. I can’t wait to see his face without the tube!
He is so beautiful:) So glad things are going well. I’ll keep praying!!
I am so glad that he is doing well. I’m still praying hard everyday for a fast recovery….I hope he comes home soon!! Love and Prayers
I love that picture of him. It looks like he’s giving us a little wave! Praise God for bringing him through all of this! I love it that he’s surprising his doctors!! Way to go Ryan!!
Absolutely precious!! Such a great picture – almost looks like he was “posing”. Just wondering – are you able to hold him? I know you must just want to squeeze him…ok, not literally – but you know what I mean:) Would you ever put him down!?!?
So excited to read the great report! Praying every day for all of you –
I skipped class and read your blog instead.
I think Ryan has your eyes… they look like your eyes from that picture you took in front of his bed a long time ago.
Oh Leighann! Ryan looks great! Will continue to pray for successful extubation in the very near future!
Yeah Praise God he continues to do well, he is so cute, hope you are holding up, continued prayer coming your way.
He looks great! His hair looks like it is lighter. I guess that would make sense cuz your girls have lighter hair. SO cute.
Dot, you just admitted to hundreds of people that you played hookie. You know mom reads this blog, right? love ya all.
Awww lookit those eyelashes! He’s adorable and I’m so glad he’s doing so well!
He looks awesome! I am so glad he doing so well. God is good!
Hugs and prayer for all
Michelle – I exercised on Monday at 6 am. and plan to do the same tomorrow. Yeah me!
Abi – I do want to pick him up too, all the time, especially when he’s crying.
Jennifer – I have only held him once in the last 6 wks. with the tube, it’s hard to control the girls and keep that thing where it’s supposed to be.
mags – his hair does have a reddish tent. some days more than others. go figure.
(leighann)
it’s like he’s waving! he looks great. he always makes my heart skip a beat. <3
I love Ryan’s picture. It makes me want to lean in and give him a big kiss.
Wow…Kindergarten and preschool…you are one busy mama!
Andrea
Hi Leighann! Thank you for the update on Ryan. He is awesome and HE is AWESOME! Prayers for his continued health and healing!
Blessings,
Leslie
Look at those eyes!! He is so adorable.
Thank God for everything. We will be praying for all the things you want to see happen, happen.
Wonderful that Ryan is doing great!
And those eyes and lashes of his…gorgeous!
Love,love,love the new pic! What a handsome fella! So glad he is doing well!!! Love and prayers continue…Richelle