Just a few notes about the day – Ryan’s numbers continue to be in the normal range. His heart races a bit when he comes off his pain meds, but they say it is normal for heart patients of all ages to have a high heart rate after the trauma of surgery. They are trying to keep him as pain free as possible so his little heart can rest.
The cardiac surgeon stopped by today to say hi and see how Ryan is doing. I asked him if he is concerned about the high heart rate and he said absolutely not. Yeah! I also mentioned I thought Ryan’s heart had sunk a little in the chest and what did he think. He confirmed my suspicion and said he thinks it is because the membrane that is covering the heart is shrinking and pulling the heart down a bit. They see this happen often with scar tissue and it could bode well for Ryan.
When looking at the membrane, I could tell it was indeed tighter looking with less rolls of skin hanging around. So his heart went from looking much like a golf ball sitting on top the chest to approximately three quarters of a golf ball sitting there.
In terms of putting his heart and/or omphalocele back into his chest, the team has not committed to anything thus far. They are still in the planning phase. We are hoping to hear something soon as we are under the impression Ryan cannot come home until his chest is reconstructed in some way.
And the biggest thing is that he is still on his ventilator. He is no longer getting supplemental oxygen, but he is getting 14 breaths a minute by vent (as of 8:30 p.m. when I left). 14 breaths a minute is a low setting (10 is the lowest it will go) so Ryan is doing a lot of his own breathing. We were here before and he failed his last extubation, so I’m not sure when they plan to extubate him again. They are trying to figure out if he failed his last extubation due to a diaphragm, heart, or chest wall issue.
In some ways, it’s hard to believe it’s only been two weeks and in other ways it seems to have gone by quickly. Our days are spent sitting in the hospital room or racing around at home trying to get our every day things done with super-human speed. The girls were away for Ryan’s surgery, but Henry is with them now. Natalie is especially having a hard time not being with mommy. She is at the end of her rope. Pray we can fill their love tanks up so they don’t feel too displaced. Signing off for now….a tired mommy.
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(c) 2016 Leighann Marquiss
Comments (16)
Hi,…My name is Linda. My daughter Lynnette Kraft posted a prayer request on her Dancing Barefoot blog for Ryan and my husband and I have been praying for him. And I have asked friends to join me in prayer for him,…and for your family. I am so glad to get the updates today, and to know that he came through the surgery and is doing good. We praise God along with you. We will keep praying.
Love in Christ,
Linda Hogeland
Every time I read your updates, they make me cry. I’m so glad to hear Ryan is healing nicely. The new picture you have of him is precious! Willa showed me pictures with his eyes open .. so handsome! I can only imagine how hard it is for your little girls not to have Mommy and Daddy time like they used to. I will continue praying for everyone in your family.
God bless!
Mara
We will pray extra for Natalie. Keep going tired mama, you’re doing good. We love you all.
Still praying . . . this brings back memories of our daughter’s first two surgeries when she was a baby. I know the weariness . . . continue letting God be your strength.
Sounds like the day went well for Ryan. I know how tiring this whole thing is, but just let God give you strength one day at a time and try to not think ahead too much (I know it’s hard).
Thank you for the update. I’ve checked for it several times today. 🙂
Take care Leighann. Give Ryan a smoochie for us all who are praing and tell him he’s got quite a fan club praying for him and his mommy, daddy and sisters and loved ones.
Love,
Lynnette
I’m praying for your little man and your family.GOD is good when things are going good and GOD is good when things are going bad. Your little Ryan is a handsome fellow.I’m so happy things went well for him today praise the LORD JESUS CHRIST! I and my family will continue to uplift Ryan and your family in prayer.May the LORD give each of you strength and peace that passes all understanding.
In CHRIST JESUS, Trennia
We’re still praying. I’m so glad to hear the good report and am praying for many more. I will be praying for the girls. That is so hard, but they will bounce back. Promise!
Lots of hugs and prayers,
Faith
The complications that little Ryan has going on was shared with me by a friend of a friend. I have popped in here a few times to get updates on your little guy. He’s beautiful! I am keeping you all in my prayers.
Blessings,
Jennifer
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Hi Leighann,
Thank you for the email! I know how the time can just drag during the hospital stay. With all the ups & downs & all the information, it can just seem neverending! Then when you look back, its seems like it just flew by. I continue to pray for Ryan and your family!
We’re so happy to hear Ryan is doing well. We pray he will be able to be extubated soon. We also pray for Natalie.
-Brent and Julie
Just wanted to let you know we’re keeping Ryan in our prayers. So glad to hear the good report. I hope he just continues to get better and better! I know it must be hard on your girls…we’ll be sure to add that to our prayers. I’ve seen God do some amazing things in my own life this week so I know that ‘with God all things are possible’!
Love and Prayers,
Tyra
I bet you are tired mommy…. hang in there. And maybe a little surprise present from mommy, unexpected will cheer the girls up. Also maybe put a picture of you with each of them in their rooms. I have that in my sons room of his dad and him here when he has to be away from his dad, and his dad has it in his room of me and him when he has to be away from me. It seems to help comfort him.
Just a thought/suggestion…..
This is all good news in this post…. I feel good about all of that.
Continue the praying…
God Bless.
I will pray more for sweet Natalie & for you guys as you look for ways to fil her tank in all the running. You guys need someone to fill you up by now I am sure! I know our Lord is opuring into you over and over but you must feel exhausted at times.
Thinking of you often. I feel like your family is becoming part of ours, even my husband checks on you guys!
My heart is with you. I can’t imagine what you must be going through. its obvious that God is holding you up, though. We are so blessed to have that in these times. You are being covered in prayer. ANd know that the rest of your children will be just fine. God is faithful!
Get your rest.
We are praying Ryan will be able to tolerate his extubation. Love and kisses, Marmi Marquiss