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Liz Stokes

Morning.

Carter went off the the OR at 7:30a this morning. It’ll be about 2 hours before we hear anything from them as they gain access and set up his lines to start the procedure. I have some work to do but not sure if I can focus to get it done. Should be only 2 or so hours worth on the computer but sitting here staring at the screen in a cafeteria full of rambunctious children and anxious adults may not be the best place to write a 19 page document for work. I may wait until tomorrow but knowing my type A personality I can’t put it off any further.

I’ll try to continually edit this post as the day goes on with the progress of Carter’s surgery.

8:50a from Dad:

As I sit here with my son in my arms, I watch as he gets comfortable in my arms and snuggles in. His eyelids become heavy. When he can no longer resist, his eyelids flutter and he drifts off to sleep. I wonder what he dreams about. Does he dream about Jackson and Lydia, Liz, me, the dogs, the cat? What might a 7 month old dream about. Whatever it is it must be good because I see the edge of his mouth turn up in a slight smile. With him snoozing in my arms I look back at the last 7 months of his life. I am amazed by how much he has overcome in such a short time. Sadly he doesn’t know any differently. To him, this is normal. He’s blissfully unaware that this is not how everyone starts off their lives. As a father I would gladly lay my life on the line for any one of my children. I would happily trade places with them to take away their pain and protect them from the horrors that could be. I watch as two of the Operating room team members arrive outside of the glass door to my son’s room. Just minutes later two more team members arrive. As the team stands outside the door going over charts I know time is short. I cuddle with Carter knowing that this will be the last time I get to hold him for many days. In the blink of an eye the team is standing in front of me ready to take my son to the OR and waiting doctors. I lean down and kiss Carter on the forehead and whisper ” I love you, remember to fight hard today”.
Today Carter will fight harder than he has ever fought, he will fight hearter.I know God has a purpose for my son and I can’t wait to see the man he will become one day and the great things he will do. I stand up from the chair that I had been rocking Carter in for the last hour and reluctantly place him in the bed. At the exact moment I placed him in the bed the laws of physics were broken. Time has stopped. Everything up to this moment is a blur. And now I watch as the second hand on the clock barely moves and the minute hand runs in reverse. It’s going to be a very long day. I invite all of you who read this post to fight hard today in your life. Do that difficult task you have been putting off, make that difficult decision, do something difficult you have been scared about in your life. Overcome the fear of the difficult. Remember today a 7 month old boy is fighting the unknown with all of his strength and you are with him. Fight hearter with Carter. Thank you all for your thoughts, prayers, love and support.

9:47a First incision is made. Carter is doing well.

11:12a- They are in and hooked up to bypass. The nurse isn’t clear on if they’ve chosen a procedure but when they do she will call and update us. Jeremiah 29:11 I pray for his heart but I know the Lord has already made his plan and we will accept that.

Update 3: 1:20p The nurse just phoned. From what she can see on the monitor they appear to be in his heart working on the biventricular repair. She does NOT have confirmation from the team as obvious not wanting to interrupt them. Carter is doing well and is still on bypass.
So this is good news but also nervous news until we get confirmation one way or the other. Dr. Bryant could simply just have looked in his heart and decided to repair a few things before moving on to the Glenn. I really hope that’s not the case but I did just crack my first real smile of the day…
Update 4: 3:15p Dr. Bryant and his team are currently patching up the ASD (hole in wall diving two chambers of his heart) and the VSD (hole in the septum).
The nurse said that she hopes in the next two hours that she’ll be able to call us and say that Carter is successfully off bypass. When I questioned this she said she could be overzealous when making that statement and just because they’re coming off bypass doesn’t mean they don’t need to go back on bypass and do some further repairs.
It is confirmed that Carter is currently in the middle of a full biventricular repair NOT a staged, not a Glenn.
Update 5: 4:45p. Carter is currently getting an echo and is working his way off of bypass. Pending no set backs it shouldn’t be much longer before we conference with Dr. Bryant and the team to get the full scoop.
This is the tough part for Carter.

Update #6 5:15: Carter is back on bypass. He doesn’t wanna come off of it. So they’re going back in and looking at his mitral valve. Checking to see if they need to adjust it. He handled the low pressures well and they immediately turned the volume back up before coding.

I don’t find it one bit ironic that Finding Nemo came on as we’ve been telling him from the getgo- “Just keep swimming”. #godwinks

Update #7 7:42p: just finished the repair and are in the process of beginning to wean him off bypass. They paged echo. I asked for more frequent updates as my mind went wild over those last two hours.

Update #8 8:00p Carter is back on bypass. There are some secretions in his lungs the team can’t reach with suction so they are calling the Pulmonologist in to do a bronchoscopy to see what’s going on. He’s stable.

Update 9 8:55p. No changes. Pulmonologist is working on suctioning.

Update 10: 9:40p. He’s not done. We’re waiting to talk to Dr. Bryant before updating any further. He’s stable.

Last Update 11. We talked with Dr. Bryant. It’ll be hours before we get to see our baby. He’s been on bypass too long, his lungs are a mess, and they’re not sure as of now what his heart function is because he’s on life support. They’re still working on his lungs.

Our hearts are shattered. The pain is real. All I can do is cry. I want my happy baby back in my arms, I want my Lydia and my Jackson. I don’t want to have to hurt them. God we need you.

The outcome is unknown. There is a little hope. God is going to have to move some major mountains. Carter is going to have to stay strong and fight.

Thank you for your prayers today.

7 comments on “Morning.

  1. Jennifer Laird says:

    We love you all and are in fervent prayer for this child of God

    Liked by 1 person

  2. keyz2life says:

    Continually keeping Carter in my prayers. He is definitely a fighter & God have a master plan for him. One day he will be able to tell his story.

    Liked by 1 person

  3. Lynn Smallwood says:

    Carter is going to be fine, he is one of the strongest little babies I know!! We are going to stay in prayer and have faith🙏🙏🙏🙏

    Liked by 1 person

  4. sharon holloway says:

    Praying for you baby Carter, your a fighter.

    Liked by 1 person

  5. Sowmya says:

    Thinking and praying hard for you guys.. fight hard, Carter!

    Liked by 1 person

  6. Tiffani R says:

    Prayers for Carter ❤️

    He has this. Don’t doubt nor have fear

    Just TRUST and keep the FAITH!!

    Liked by 1 person

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