Thursday, April 23, 2009

Update: 4-23-09

Man...where do I start? Just when I thought the "bad days" were behind us, we hit a concrete wall. And that's exactly how I feel. The way I felt the day of Ethan's open heart surgery has nothing on this. I can't explain the sheer sadness and frustration I have right now. But, I want you guys to know what's going on with our son and, honestly, blogging has been somewhat therapeutic through the past 15 hours.

Given what his body has gone through since yesterday, he's doing pretty well. There's one number in particular that we've been watching, which is the level of lactic acid in his body. Normal range is around 1, with 3 being on the high side. When Ethan was brought over to the PCICU last night, his lactic acid level was 24. This almost guaranteed that he would be hooked up to the ECMO machine, but the doctors decided to wait it out and see what his body would do. As of right now, his lactic acid is 3. Simply amazing.

The idea is that as this level drops, his heart function should improve. Unfortunately, the echo that was performed this morning still showed that his heart is not functioning as it should. It's hard to say if this is due to him still recovering from cardiac arrest, or if this is going to present a problem. The next 24-48 hours should shed a little more light on that.

Also, in regards to his heart it is now producing beats on its own. Well, the way it does with the pacemaker, I should say. Last night, both the atria and ventricles were being paced at a rate of 130 beats per minute. Today, his atria is beating on its own and the ventricles are being paced to keep up. This is the same way his pacemaker was performing before all this happened. I hope that makes sense.

Chest x-rays show that his lungs are looking OK. He was given Surfactant last night and this has made a huge difference. His oxygen saturation levels are staying in the high 90's, and often times, at 100%. The jet vent seems to be doing exactly what we want at this point.

We met with a general surgeon this morning in regards to his bowels. The thought is now that maybe the bowels weren't the problem to begin with. The x-rays look OK (not necessarily normal, but OK) and don't seem to be a cause for concern right now. The surgeon said he's mainly concerned about how they will recuperate from the lack of blood flow they received while Ethan was coding last night. They will watch him over the next few days to check the function of those as well.

A quick, preliminary ultrasound of Ethan's brain showed that it looked structurally normal, with no areas of bleeding. However, the radiologist asked that the ultrasound be repeated this morning just to get a more thorough idea of what's going on. The chest compressions last night lasted about 10-11 minutes, so there is some concern that his brain could have been injured due to a lack of oxygen. There are no signs pointing to this right now, but again, everyone triple checks things around here, so we'll hopefully know something this afternoon.

It also seems as though Ethan's kidney function is good. He is peeing as he should, which is a really good sign. He may be put on Lasix just to help pull off some of the fluid they've been giving him over last night and today.

I wish I could sit here and update you guys on the logistics all day long, for your sake and mine. It's almost like I turn into "robot mode" as I listen to doctors and come here to share the information. I become emotionless, and that feels good right now.

But when I really sit for a minute and realize what is happening to our family, it's more than I can handle. When I see him looking worse than he did 6 1/2 weeks ago, I can't deal. I absolutely loathe seeing him like this, yet something stronger than myself keeps pulling me to his side. I try to think about his sweet smiles, his cry, and how healthy he was just 2 days ago, but that almost makes it worse. I get sick to my stomach when I think about the going home outfit we bought last week, or the carseat I just had installed. He should be wearing those cute clothes. He should be riding in our car, sleeping in his crib, and meeting so many of you. But he's not. He's very sick and, as of right now, no one knows why. I want this rollercoaster to stop. I want him to be well and doing all the things we had imagined he would do.

But he's not, and I can't deal with the reality of that.

20 comments:

Taylor said...

My dear Joye, how do I even comprehend what you and Jeramie must be going through. My heart is heavy, but full of prayers to our heavenly Father. He has his hand on your beloved son, and will continue to lift you up during this time. My God give you a peace and an overwhelming strength during the coming days.
All my love and prayers,
Taylor

Jeffrey Scott said...

Joye,
My heart is heavy with grief for you and your family. Ethan has fought and fought, and God is going to continue to give him the strength to fight. Sometimes we never know why these things happen, and sometimes we never will. We don't know what the future holds in the precious life of Ethan, but what we do know, is the absolute best treatment for his illness is your and Jeramie's unconditional love. He may not be able to be in your arms; he may not be able to giggle with Jeramie, but what he can do, is absorb your and his love. Your simple presence and vibe of joy and love for your son is the best medicine he needs right now. We all love you, and although I've never met Ethan, I love him just as much. Mom and I just cried together, and prayed together. I'm spreading prayers, your blog, and your banner everywhere. I posted the "Prayers for Ethan" banner on all of my social networking sites. A lot of us old-timer cold stoners are also keeping in touch with each other, and your updates, holding strong with prayer. I love you, Joye, and I'm sure Ethan and Jeramie are a perfect completion to your family. Although we don't like to question God, and our faith, it is only natural at times of tragedy. No matter what happens, God knows what you're going through; he knows your faith is strong; he forgives for all of our frustrations, and he will always prevail. I love you,
Jeff Keleher

Anonymous said...

Oh Joye....I am so sorry for the heavy weight on your heart right now. I can not even imagine your aches right now of trying to comprehend why this is happening and how you are to stay strong through it all. But if it helps any at all, you know you have many, MANY praying for your family right now. I took a moment right here at my desk(just like you asked in your blog) and sent up a prayer for him too-- for him to be strong with what he is going through, for you to be strong for him (and smother him with love and kisses for strength!), and for the doctors to be strong and get him well so you can finally bring your sweet, sweet boy home.

Lois
-- if you need ANYTHING, or would like for me to stop by again to bring you lunch, or just to chat..here is my cell 919-449-4414

Nancy Morton said...

Joye,
We are praying in Arkansas. Audrey's family and friends are praying for you all. You may remember that Audrey had to be put on ECMO. She crashed in the OR during her second surgery. We know that feeling and know that prayer is all that helps. God has not left you. My prayer is that the doctors will locate the problem. We know that Ethan is strong and will fight.
The teachers at my school are praying for Ethan. It's the best thing we can do.
Much love,
Nancy Morton

Anonymous said...

hello joye,
coming from the medical end, i know you guys have gone through pure torture {i could think of better words to describe it :}}this past 24 hours. there is NOTHING more draining than what you two have experienced ... to be soooo close and yet now soooo far. to not want to deal with reality is most understandable. to want to scream, to be angry, and be down right at the absolute end of your being is where most parents would be at this point. these emotions and feelings of helplessness are reality and should be expressed.
my heart is with you two. as a neonatal nurse i want to uphold you and continue to pray that the medical team will have absolute wisdom in his care!

IN THE KING ...shelley aka daniel's mom :}

Mandy said...
This comment has been removed by the author.
Janet Fuller said...

Joye & Jeramie. I wish I had great words of wisdom to say right now... but I do not. I ache for you both. There is a bond in family that is so strong even when we live so far away. Terry called me this morning (they should be here in an hour or so) and asked if I had read the blog. I knew that something had happened since yesterday post that was so good. I cry as I hear your pain and the confusion, anger, and frustration you are dealing with. We continue to lift you, Jeramie, and Ethan up to our Lord. It is ok to question, HE knows your heart. Love always. Auntie Jan

Anna said...

Dear Joye, You and your family are in my prayers tonight. I know feelings are so overwhelming right now and that somehow you are having the strength to go day to day. God will give him strength and renew your spirits in those hard moments. You are an amazing mother, you have an amazing family, and you will continue to be in my thoughts and prayers. I hope the coming days God will continue to give you strength.
All my love and prayers,
Anna Mendez Holloway

irishblondie said...

Joye & Jeramie- I know you don't know me (I'm one of Jennifer Enzor's friends who goes to church with Adrienne) but I've been following your blog and will continue to pray for Baby Ethan & for you two as parents as you face these difficult times. Sincerely, Shannon

Heather Thompson said...

Joye, my mother (Trevor's grandmother) wanted me to make sure you knew she was still praying for Ethan and both of you.

I'm so thankful that you feel like you can express yourself here in the blogs. Everything you are feeling right now is normal!!
Just as we did with Jodi and Torrey, we feel helpless... there are no words that can heal your pain ~ as much as we wish there were.
Know that we are on our knees in prayer for Ethan, you and Jeramie. Love and prayers, Heather

Chris said...

Praying for you up in Baltimore ...

Janet said...

Let go and let God...my five finger rule...He will continue to give strength to you, Jeramie and Ethan. You are all lifted up by many!!!

Ramsey said...

Prayers are being sent from Ohio! Love you all!
The Ramsey's (Amanda's parents)

Amber Bailey said...

Dear Lord,
Please be with little Ethan. He is fragile but we know he is in Your Loving Hands. You are making him strong in ways we can not imagine. Be with Joye and Jeramie, keep them well and strong for their little boy who needs them now. Be with the doctors and nurses who are making decisions about what is best for Ethan. Guide their hands and their minds to be in step with your plan for this sweet boy.
Amen

Heather said...

Joye-
I've been following your blog regularly since Ethan's birth, and praying for your family daily. We serve a mighty God who will faithfully see you through these challenging times! I am continuing to pray for you guys!

Heather Whitley

Diana said...

praying...praying...praying
love you all!

Becca Barnhart said...

I am one of the teachers from Nancy Morton's school (in Arkansas). She told us today about Ethan and the new, desperate need for prayer. I have just sat on my computer and read all of your blogs from back in February when you were first put on bed rest. I don't know you really, but I feel like I do after reading your words over the last couple of hours. Remember, God is in all of this. He is in control. He know what is happening, and what the final outcome of all of this will be. None of this surprises Him, and He has a plan for it, that you will continue to see as He unfolds it before you. I promise to pray with all my strength.

Rachel Clifton said...

We've never met, but I found your blog through a friend. I just want to let you know how much your story has touched us and that we are praying for you with everything that we have. God is great and He'll see you through. Stay strong!

The Cliftons

Julie said...

So sorry to hear about all of this happening continuously..praying for you!

Mark said...

I'm so sorry for this awful turn of events. I was getting excited for you to be going home soon. Hang in there. I hope everything turns around and that you are soon able to allow yourself to start thinking of going home again. Amy and I are thinking of you.

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