Ryan’s oxygen saturation has been running lower and more erratic than (his) normal. Oxygen saturation (SO2), or in doctor lingo “sats”, measures the percentage of hemoglobin binding sites in the bloodstream occupied by oxygen (in layman terms, how much oxygen the blood is carrying). Normal is 100. In the first week, Ryan’s sats were in the 80s and occasionally dipped into the 70s, which is acceptable for a heart baby. However, since Sunday, we started seeing him more in the 70s with dips into 60s. Yesterday, he was in the 60s with dips into the 30s.
The sats volatility concerned the doctors so they ordered a cardiac catheterization (heart cath) yesterday. Basically, they make a small puncture in a vessel in the groin, insert a guidewire into the incision and thread it through the vessel into the area of the heart that requires visualization. They then inject contrast agents (dye that is picked up by the imaging device) to study the shape of the heart vessels and chambers.
As we expected, his pulmonary arteries are small, but the kicker is he seems to be getting very little blood flow through the pulmonary valve, meaning most of the blood is not getting to the lungs via the traditional route, but rather from collateral vessels. We knew the collaterals were present, but didn’t realize there is one primary collateral basically doing everything. It is possible that he had other collaterals earlier. These vessels are very unpredictable and can close down, which might be what happened resulting in lower sats.
The cardiologists sat down with us last night and walked us through the pictures taken in the cath lab. They were great as we had about 200 questions they graciously answered, but at the end of the day it came to a simple decision: either attempt surgery to increase the pulmonary blood flow to the lungs or do nothing. After the doctor’s left, Leighann and I discussed the options. The discussion was short, we felt that we’ve come too far to quit now. His surgery will take place Thursday morning around 9:30.
Along with the ectopia cordis (heart outside), Ryan has a very unique heart configuration that makes things very complex. This morning we met with the head cardiac surgeon at Children’s to discuss the surgery. He was realistic about our chances – they’re not great. In his words “if you wanted to try and construct the worst combination of problems, you couldn’t go much farther”. He went on to say that no one has ever been successful with this combination of issues. However, he was quick to point out that only a few of these configurations are documented, even less in the modern era in developed countries with sophisticated medical treatments. The cold reality is Ryan’s heart condition is very rare. The surgeon reiterated we are in unchartered waters, but thinks it is reasonable to proceed with surgery. He feels confident Ryan will survive the actually surgery, but unsure what the weeks and months to follow will bring.
We knew Ryan was unique, but he has the chance to be a true first. So of the 100 billion or so people that have lived on earth, Ryan could be the first to survive with this anatomical configuration. We are praying he is able.
Comments (36)
We are fervently praying for Ryan, the doctors, and you all- especially with his surgery tomorrow.
I’m sorry to hear of the unexpected turn of events. I pray everything goes well for you guys tomorrow. ~Mara
We are praying & our hearts are there with you. I wish I could be there with you, but I need to watch the girls. They are doing well here. Love & Constant Prayers to our God who is the greatest ONE of all. Marmi
We’re thinking of you all the time and sending lots of love your way.
Thinking and praying for you and your family, though especially for dear, sweet little Ryan and the doctors responsible for his surgery tomorrow.
We will be praying for all of you! What a testimony you all have been, and what a fighter Ryan is!
-Heidi and Jason
We are praying for a successful surgery tomorrow.
-Brent and Julie
I’ve gone through your posts and read about your sweet baby boy. Ryan is just adorable. I’m so sorry for your trial, but I know it must be a great encouragement as you remember that your precious son is fearfully and wonderfully made. God has a plan and will only see it through – there will be no surprises to our faithful Creator.
I’ve waited through open heart surgery before too – twice in two weeks. My daughter also had very severe heart problems: Single ventricle, heterotaxy, coarct. of the aorta, pulmonary stenosis, tapvr, and a host of other things. God was faithful through it all and I know that he will make his presence known to you through the surgery, just as he has these two weeks since Ryan was born.
I received an email from Willa asking me to pray for your family, and I promise you that we will. I’ve told my husband and my children your story and they’ve all said that they’d pray – so that’s 7 (our 1 year old isn’t so good at it yet) that will be on our knees – with understanding – praying for Ryan and your family.
Love,
Lynnette
You surely have my prayers tomorrow morning and I will be asking my blog readers to pray as well. The Lord is with you and he fights for you. I pray much wisdoma dn a steady hand for all ssurgeons and nurses and attendings involved! This sounds like the perfect situation for our God to show up and do his thing… another MIRACLE!Praise God that we can trust him and know that he has our best in mind all the time.
Tears are running down my face as I have been reading your blog. I will be praying that God will give all of you strength to get through this. – Andrea
Praying for you and Ryan and the doctors. love you all.
Praying, believing, hoping, and holding on with you tomorrow. Please know…there are strangers, people you don’t even know, who love your family, your precious son, who are upholding you all in prayer. Our God is a miracle working God. I’ve lived it. Praying that you feel His presence as He holds each of you in the palm of His hand. Praying for wisdom for the doctors and nurses. Praying for healing and restoration for Ryan’s precious body. Praying for strength for each of you. You are loved.
Your Uncle Richard and I are praying for you and your little Ryan. I am so sorry to hear about these turn of events. God does perform miracles. We pray for one here. We love you very much.
Aunt Karen and Uncle Richard
We are praying for Ryan, you guys, and for the medical team to be guided by God.
We will be praying for wisdom for the medical staff, strength for you guys as you wait and strength and healing for precious little Ryan! God is good…and He is able!
Sara & Rick
Henry and Leighann,
I’ve posted a blog asking for prayer for Ryan. Keep us updated (as you are able) and we’ll keep the prayers coming your way.
Lynnette
I don’t know if you guys remember me, but my maiden name is Beth Hose. I went to Heritage for 6th-8th grades during 92-95. I remember you both so well, even though you were a few years ahead of me. I was prompted to read your blog from a prayer request on Facebook. I have been sitting here for the past hour reading your story.
First and foremost, I want to say that I will be praying for Ryan and the both of you as you continue this battle. However, I would like to say how touched I’ve been to hear your story – not so much what you’ve gone through but the Glory you give to God every step of the way. We have a BIG God and He is able to do impossible things! On the outside looking in, I already see that God had a will for Ryan to live days on this earth, just by the people that were put in your path and having “hunches”. Praise God that this little man has touched your lives and many others already!!
PS. Your Girls are GORGEOUS! You are so blessed with a wonderful family!
Beth Hose/Hunt
I am sorry to hear of the change of plans. The amazing thing is that this is not a change of plans for God. He is in control and sees the big picture. He knows the outcome and He will hold you all through this. God is able to carry Ryan through this and allow him to be “the first”. Sending lots of prayers for you, Ryan, and the doctors.
God bless,
Faith Mahoney
Praying for your sweet baby boy…..
God Bless.
Praying that Ryan will be strong and the Dr’s will apply all the wisdom God gives them. Praying for God’s peace over you and Henry.
I am lifting your family up in my prayers. God is still in the miracle business.
We are praying for Ryan, the doctors and your family. love, marshall & melissa
We have a picture of Baby Ryan on the white board in our classroom and we pray faithfully for him every day. We will especially be praying today.
Tammy Brewer (Leighann’s junior high Spanish teacher) and the 7th grade class at Heritage Academy
We are praying for all of you.
Leighann,
Abby and buddy kept me up all night just so I could pray for Ryan. I prayed for him all night and have been in constant prayer this morning. God is a God of miracles and I am begging Him for one. I love you, Henry, Ryan and the girls. I have asked everyone I know to pray hard today.
For thou wilt keep him in perfect peace whose mind is stayed on thee.
Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:11
Surely he will nver be shaken; he will have no fear of bad news; his heart is steadfast, trusting in the Lord. His heart is secure; he will have no fear; in the end he will look in triumph on his foes. Psalm 112:6-8
I willtake refuge in the shadow of your wings until the day of disaster has passed. I cry out to God most high; to God who fulfils his purposes in me! Psalm 57:1-2
Do you not knwo have you not heard? The LORD is the EVERLASTING God, the creator of the ends of the earth. He will not grow tired adn weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Isaiah 40:27-29
Praying for your family this morning.
I just ran across your story on Lynette Kraft’s blog and wanted to let you know I am praying here in Va 🙂
came to you thru courtney’s blog a while back. i have been following your story ever since. know that many are praying for you today…people you have never even met. may that bring you a bit more peace today.
many prayers….
cassie
I read about Ryan on Lynette Kraft’s blog. Ryan is SO precious! I will be praying for Ryan, your family, and the surgeons today.
Thinking of you both and praying for wisdom, peace, and comfort through the surgery today! God does not promise us an easy road, but he does promise to hold us in His mighty hands!
much love,
Carolyn
praying alongside you.
grace and peace be your strength.
robyn in milwaukee
Found your blog through Lynette at Dancing Barefoot on Weathered Ground.
Praying for all of you, medical team included, that this surgery would be without trouble and full of healing for Ryan. That whatever man says, Ryan’s fighter personality will gleefully prove them wrong.
heaps and heaps of peace to you and your family. Praying!
Little Ryan will be in my thoughts and prayers. God bless you and your family.
I just want to share with your family that GOD is able!! Jer. 32:17 says ,”ah sovereign Lord, you have made the heavens and the earth by your great power and outstretched arms, nothing is too hard for you!” I hope that you’ll be encouraged by God’s word… HE IS ABLE!
Praying for your precious little one as he goes through surgery and for momma and daddy and the siblings… that you would experience peace and comfort as you wait. Lifting you up in prayer!
I found your blog through Lynette Kraft’s post about Ryan – Ryan is so precious. I have sat in a waiting room six times while my daughter was in surgery, and although her condition is not as serious as Ryan’s, we did face some scary times, and I am praying, praying, praying for y’all!!!
Lord, I pray that you comfort Ryan’s family today and in the coming days, and they face this uncertain and scary time. I pray for sweet baby Ryan, that he may be restored to that perfect health which it is yours alone to give. I pray for the surgeons and nurses today.
Leighann,
Just wanted to let you know you are still in my thoughts and prayers.
Mom was telling Hannah the other day about our experience in Philladelphia 😉 remember that? I remeber so many fun times with you as a kid.
I know that God has a plan for this. I love you. Amanda