Monday, September 20, 2010

here is what we know

Joshua crashed again this morning at 8am. heart rate in the 40's. unresponsive. breathing hard and labored.

I immidiately grabbed the nurse and she had just checked on him 10 minutes prior and he was fine.

She called the doctor in and she immediately said he needed to be intubated. They intubated him, and ran all sorts of tests on him.

They also did an echo.

What we know right now is that he has severe acidosis. Basically his lungs are hogging his oxygen and his body isn't getting enough. This came on quickly and with no warning. His 5am blood work came back all within the normal ranges.

Right now, his shunt is open, and blood is flowing. The cardiologist wants to treat him for the acidosis and go from there. He also is going to talk to the surgeon and talk about the possibility of the shunt being too big. If that is the case he will be looking at another open heart surgery.

Please be praying. I'm all over the place and an extreme mess. Shane is on his way down the kids at daycare. My parents will care for them until we get things under control.

Please pray that surgery is not needed again. I feel like I'm to the point of having to decide when enough is enough. If he doesn't stabilize soon, surgery may not be an option if that's what the doctors decide is the best option.

I'm a mess. please be praying.

38 comments:

Stefenie said...

Jill,
{{{HUG}}} I am praying very hard for Joshua and all of you right now. Praying he does not need surgery again. Praying that the docs can get his acidosis reversed and back under control. Praying for continued healing for your precious boy. Praying for lots of strength for all of you.

Hang in there!!! Have you covered in prayer right now!

Anonymous said...

Jill, prayers are being sent from our heart to yours as well. Remember this is a delicate road we travel as heart parents. Sometimes we go forward, but as in any dance, sometimes we go backwards too. Small steps.

I know this puts you in the land of "where do we go from here" Just know you have many people sending prayers your way - that is always a good thing! I have to go to Church today to drop some items off, if it is ok with you, I will add your first names to the Prayer List.

Shannon Egan

Callie said...

So many prayers heading Joshua's way.

Christie Huggins said...

Dear Lord, Father in Heaven,

Please be with this family now. Please be with Joshua. I don't even know what to say or how to pray, so please let the Holy Spirit fill me today and pray intercedingly for me. I haven't a clue where to begin. I know I HATE HLHS, and I pray that you stop this heart defect in it's tracks for future babies. I pray that Joshua remain comfortable and that you send your kindness and most compassionate of angels to hold him at all times.

I pray this in Your Son's Holy Name,

Amen

Stacey said...

Praying for sweet Joshua. He is a fighter; all of our kids are fighters. Please remember that during this time. We've all experienced set backs during this journey, some more serious than others, but keep the faith.

Heart hugs,
Stacey

Tracey Snyder said...

Jill,

Praying hard for Joshua and your family to get through all of this! The post-op 2 step stinks and pray his acidosis reverses very SOON! Strength and hugs to you all!!

Always,
Tracey, Jeremy, Riley, Drew and Jordan Snyder
www.ForTheLoveOfMendingHearts.blogspot.com

Christy said...

Praying for you and Joshua-wish I could say more. . . you are not alone.

mina said...

Prayers for Joshua from another heart mom!

Amy Schroeder said...

Praying without ceasing. Nothing is too big for God, please know that today!

Drea said...

I am also a heart mom.. My prayers go to you and your family.
Drea ( heart mom the Hunter )

Michelle said...

we are praying so hard over here right now. i am a heart mom to my angel Sawyer. praying to have him watch over you all.

Anonymous said...

Keep fighting for your little guy... There are always set backs some bigger than others! Don't ever give up even when your worn out!! From another heart mom!

Anonymous said...

I just have to say that THIS is what I love about being a "heart mom" the never ending support, the rally around when someone in our community needs prayers, the "I've been there and feel your pain" moments....though this is not my baby we are talking about I just wanted to give a big THANK YOU!

Shannon Egan

Erika said...

Jill, we are praying so hard! ((HUGS))

Linda said...

Oh, Jill, I am so sorry that this has happened. Hang in there...take it one day at a time. Heck, days like today, take it one minute at a time. I know what all this is like, it's hard and painful, and those minutes seem like hours. Prayers heading your way that the doctors can get Josua's acidosis turned around, and get him back heading in the right direction. Don't give up! And...I agree with some of the others- move in. Either my mother or I stayed with my little guy all the time, even when he seemed stable, it helped everyone's comfort level. (yes, even the nurses)

Wendy said...

Praying for you guys today.

Danielle said...

Praying hard all day for sweet Joshua and your family. Praying for strength, peace and comfort as well as guidance for the doctors. Being a heart mom is SO trying, but just know that much love and many prayers are surrounding you today!

Anne Mulvey said...

You are all in our thoughts & prayers. It is utterly heart wrenching to do the 1 step forward, 1 step back dance. Many times I had my hopes up because Owen was improving & I thought, just maybe, we were one step closer to getting home. But it seemed like every week we had another setback.

You will get though this, stay strong. Hugs to you.

Carolina Carters said...

Praying, praying, praying!!!!

The mom of 4 monkeys! said...

Praying...

ukeilers said...

Oh Jill (and family) We are and will continue to pray for you all. That God will sustain little Joshua, that the Doctors will be granted with extra wisdom as to what to do for him, and for peace and strength for YOU. Hugs from Huntington. Let us know if we can help in any way with the kids. Tammy Eilers

Amy Bennett said...

Oh Jill, I'm so so so sorry. Wanted to try to give you some hope - Bodie has been extremely acidotic and ill on several occasions and each time, they've been able to find the right mix of meds to bring him back - and look at hom now, thriving and beautiful. Yes, he's had to be intubated and put back on drips each time, but he's fought through (in his case, each time was due to either a bacterial or viral infection). He also had to have a shunt revision (but because his was too small, not too big) and made it through that as well. I KNOW how scared you are - just keep on praying and have faith!!! Big heart hugs!

Zulutime said...

Jill-

I have dispatched the prayer warriors at our church, God has got this under control. We are praying for you.

Nathan and Brandy Shelley

Avery Tales said...

Jill, I'm praying, praying, and praying some more for God to heal Joshua's acidosis and to give you His strength now! I pray that He gives you the peace and comfort you need to put one foot in front of the other. He is always there. Nothing is too big for Him and He will see you through this storm.

For Our Brave Heart, Sam said...

I cam across your blog via another heart mom's blog. Just wanted you to know a fellow heart family from Macon, Georgia is sending prayers your way!
Kathy

Mary E. said...

PRAYING!!! I am praying so hard for little Joshua right now to stabilize and for another OHS to not be necessary. ((Heart Hugs))

Sonnie said...

Bless your heart--you and your family are always in my prayers. God us surrounding you right now.

Anonymous said...

Prayers from another heart family in Missouri

Anonymous said...

Praying!
Shannan Davis
proud mommy to Jamie (PA/IVS)

The Great Mooski said...

Jill- we are praying...

I'm so sorry.

Amy

HennHouse said...

Praying...

Loving...

And praying some more...

Anonymous said...

I will be praying for you.-Tori

Anonymous said...

Heart parents make decisions no parent should never have to make. Not just once but many times. You know we had the WORSE time of our lives after our daughter's Norwood so my views about how far is too far is probably a lot different than most parents. Ultimately you will have to make a choice. God will not in most cases take this from you but He will carry you through it. Praying for wisdom and strength but most of all peace. Whatever decision is made, whatever the outcome...Joshua is loved. Crystal in IL

Wendy said...

Our prayers are with ALL of you! I can't imagine what your going through as a mother. Joshua is a fighter and he is loved by so many people!

Blogging Friend said...

I found your blog through another heart mom and I wanted to leave a comment.
I am so sorry that you guys are going through this, but DO NOT give up on your hope and faith in the Doctors but most importantly God.
I use to work for many years in NICU and PICU and have seen lots of miracles happen in both.

I pray that Joshua does not need another surgery. I also pray that Joshua stabalizes enough for the option of surgery is there. You have to trust what the Doctor's feel is the right thing.

I know things look bad to you right now, but I have to say this over and over. DO NOT GIVE UP HOPE OR YOUR FAITH! These will get you through every day of this battle. MIRACLES HAPPEN EVERY DAY!

I am praying for all of you guys and I will keep an eye on your blog.


Sheila

→Daniele← said...

Sending lots of prayers...

Kim said...

Jill, Makenzie had acidosis too. Just remember you are in the right place for all of this to be happening. God wants you to keep learning about things. Don't give up, Joshua hasn't. These are all signs from God. Remember to take it moment to moment and focus on the now and not what about later. Praying...

courtney said...

hang in there and fight...fight HARD make your voice HEARD...keep praying you will make it through this storm.

 
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