As Kristen – FKA Anonymous pointed out, I haven’t updated on Ryan’s progress in almost a week!! Bad, bad girl! Seriously? What kind of mother / friend / blogger am I? … Here’s the long overdue dirt on the dude.
Ryan is on low-flow supplemental oxygen at a setting of 3 (I’m not sure low flow is really a term, I’m just sayin’ he’s on the opposite of high flow). High flow starts at 4 so he’s just coming off the high flow, but it’s still a really big deal for him. Pre-plication he was having a hard time coming down below 10.
He was extubated from the vent to high flow of 20 last Friday so in less than a week came from 20 at 100% to 3 at 60%. Yeah!!! His sats are mainly in the 70s, although when he’s mad he dips into the 60s and sometimes I look up and he’s in the 80s. But more importantly, his PAO2s (also referred to as PO2s) are in the high 30s and low 40s.* This is the highest his PAO2s have been since I’ve known him, and let’s just say I’ve known him since the beginning.
Ryan has been smiling like crazy since Monday. He is becoming so playful now that he doesn’t have to be so serious about breathing. Monday when I was reading to him he actually cooed a lot of the time. I’ve only heard him coo a handful of times (I literally mean like 3 times, I’m just throwing in the extra 2 to be generous). So, I was excited to finally hear him talk. And he laughed when I played peek-a-boo with him. Typically when I play peek-a-boo he looks at me like I’m an idiot while trying to figure out why I am hiding behind my hands.
Today, in between all the smiling and kicking, I think he managed to laugh with noise 3 or 4 times. It seems silly to count the number of times you’ve heard your son laugh out loud or coo, but with a child who was vented for so long, it’s exciting to think he’s finally getting the hang of using his voice.
The plan now is to leave his oxygen at 3 and work on weaning down on some of his medications. He was almost off all his meds before the plication, but with the surgery everything and more came back on board. This picture is of him with a methodone smile. You can see it’s just a little more relaxed than the first.
All in all everyone is very excited about Ryan’s progress including Dr. J, the head surgeon, who came by today to check in. He said Ryan is looking very good and he’s “encouraged by him”. Anyone who knows Dr. J knows that him being encouraged by anything is MAJOR. The man is the epitome of a realist when giving us Ryan’s odds. In fact he reiterated today that there are absolutely no documented cases of someone with Ryan’s structural defects (ectopia cordis) in conjunction with his heart disease (single ventricle, etc.) surviving. Period. And that so far, Ryan has defied all odds much to everyone’s amazement and joy. I think he might have actually smiled while telling me this.
I know all of you want to know what the next step is and when they will tell me Ryan will come home. I don’t have an answer for you. As with the entire last 9 months, we talk about today, not tomorrow, not next week or the week after that. For today we will be thankful in the fact that Ryan is progressing at a rapid pace and is enjoying his new diaphragm.
*I believe healthy PAO2s are 80 and above while most ‘sick’ kids sit in the 50s.
(c) 2016 Leighann Marquiss
Comments (26)
Such a precious smile! He is such an amazing baby boy.
I am ‘encouraged’ everyday by your posts on your family and sometimes brought to tears (like NOW!) when you talk of baby Ryan!
God is awesome in all things!
Oh I love seeing the smiles and thinking of him cooing and laughing for you Leighann! Thanks for the update. He is indeed your miracle boy. He is so very precious!
Linda @ Truthful Tidbits
those are awesome pics of Ryan… are those 2 bottom teeth I see? What a cutie!!
A post without a title. That is unusual! I wondered how you came up with a title EVERYDAY!
Today’s untitled post was sooo full of good news and a cute picture to boot.
I am so excited to read that Ryan is doing so well. God has been so good.
Praying for you all daily. love ya.
I will give the post a title:
HALLELUJAH!
oh, he is so cute. Praise God he is doing so well! i can’t wait to see him again!
What an incredible picture of the little man! Wow, I just want to kiss those cheeks over and over again!!!!
I LOVE how ‘lit up’ he is in that first pic!
Ryan is truly a blessing, Leighann! That smile is contagious! I’m so glad to hear that he is doing well…my mom and I were just discussing how he was last night, and I’m so glad u updated today. I try to look at your blog everytime I’m near a computer. I love to see all the pics of your family and updates on everyone. I will pray for continued great news! Love u all!
Richelle
Hey I never usually post but I read your blog often 🙂
I just wanted to say I am so happy to hear how well he is progressing!
I totally understand you on the cooing and the laughing counting.
I remember when my son came home from open heart surgery, it was 2 days after we had been home that we finally heard him laugh for the first time.
We tried to get it on camera, but of course he would not perform on command!
I hope your whole family has a very merry christmas 🙂
Hey I never usually post but I read your blog often 🙂
I just wanted to say I am so happy to hear how well he is progressing!
I totally understand you on the cooing and the laughing counting.
I remember when my son came home from open heart surgery, it was 2 days after we had been home that we finally heard him laugh for the first time.
We tried to get it on camera, but of course he would not perform on command!
I hope your whole family has a very merry christmas 🙂
Hey I never usually post but I read your blog often 🙂
I just wanted to say I am so happy to hear how well he is progressing!
I totally understand you on the cooing and the laughing counting.
I remember when my son came home from open heart surgery, it was 2 days after we had been home that we finally heard him laugh for the first time.
We tried to get it on camera, but of course he would not perform on command!
I hope your whole family has a very merry christmas 🙂
Thanks for the update and the photos Leighann. So glad Ryan is doing well since the last surgery. Will continue to pray he has a blessed Christmas season!
How wonderful to hear your little guy laugh!! Go Ryan!! I love you positive upbeat posts. even when days are rough you find the positive… you’re an incredible woman
Well, of course he is beating the odds. No one told God the statistics!
The pictures are precious. I think we will make a copy of that big smiling one for our church bulletin board, with your permission of course. We have been keeping up on Ryan’s progress and keeping him in our prayers.
Lots of love and prayers,
I see Mama and those pics!!!
I’ve been following your blog and am so thrilled to see the big smile on Ryans face. All the best to your family in this holiday season. Will look forward to future updates of Ryan’s progress!
He’s so sweet! I just love him!!
Oh he looks so much like Henry and Ainsley in that first picture! Oh he is just so stinking cute! Praise the Lord for His work. What an amazing physician He is.
Praise God for all He has done. So glad to hear Ryan is making such progress. It’s exciting to see him in the milestones of cooing, laughing, smiling! He has such an adorable smile I love it! 🙂 so precious! 🙂 That is right, only focus on today and be thankful for what you get/have. 🙂 Continue to pray for all of you:) <3
What incredible answers to prayer since your “it wasn’t the magic bullet” post. We’ve been praying hard. Thank you, Lord, for giving them these sweet days with precious Ryan’s smile, laugh, and coo. If it would be your will, please let him come home.
Bethany
That is no doubt the most exciting post I have read all week!! Its beautiful….and so is his smile!! And his laughing for you brings me to tears:) Rejoicing with all of you – and thanks for sharing!
That sweet baby of yours just made me smile. Oh, that CHEESY grin is SO cute!!!
So glad he is doing better and that the doc is “encouraged”.
Love,
Lynnette
OH…OH…OH….Thank you so much Leighann! I got my Ryan fix for the week. The smile is precious! I can see his teeth and almost strawberry-blondish hair like his sisters??? Fabulous news about Ryan, I think and pray for him daily, and I am so pleased to follow your blog, even when you don’t post about Ryan. But I truly love watching his progress. He is an amazing little man that is set in motion to do more then just educate us and stun your doctors! He is meant for big things and bigger plans. 🙂 Only God knows!
*fka anonymous
yay! he’s so cute! I’m glad he’s doing better!
This post almost had me bawling…counting and knowing the times Ryan has cooed and laughed out loud.
I can’t be crying either…I’m at work in front of a video screen!
So I had no business reading the post underneath about Ryan’s tree ornament for his 1st Christmas.
love you,
Bonni