Changes...

>> Tuesday, August 25, 2009

They just called us to let us know Max is going on ECMO.

By definition : In intensive care medicine, extracorporeal membrane oxygenation (ECMO) is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function.[1][2]
An ECMO machine is similar to a heart-lung machine. To initiate ECMO, cannulae are placed in large blood vessels to provide access to the patient's blood. Anticoagulant drugs, usually heparin, are given to prevent blood clotting. The ECMO machine continuously pumps blood from the patient through a "membrane oxygenator" that imitates the gas exchange process of the lungs, i.e. it removes carbon dioxide and adds oxygen. Oxygenated blood is then returned to the patient. Management of the ECMO circuit is done by a team of ECMO specialists that includes intensive care unit (ICU) physicians, perfusionists, respiratory therapists and registered nurses that have received training in this specialty.


I really am not sure what to think right now...I am seriously at a loss at how we can go from getting ready to be extubated to getting ready for ECMO in 24 hours. This makes no sense...Please be praying for Max and Claire (and me). This is NOT the place we want to be right now...I feel totally helpless and I can't do anything to help him. This sucks.

Jordan

36 comments:

mikeo75 August 25, 2009 at 7:23 AM  

You guys have a lot of people praying for you today, so know that God is right there with you.

Teri August 25, 2009 at 7:54 AM  

Oh I am so sorry to hear this! We are praying right now for your sweet boy and for the doctors and for peace for you and Claire. Thanks for keeping us updated. We continue to pray him on home. Hang in there you have more folks than you can even imagine praying for your precious son.

Unknown August 25, 2009 at 8:12 AM  

Yuck. Glad he's such a fighter, now we know why God gave him so much spunk, He knew the battles ahead. Hang in there.

Rachel Shears August 25, 2009 at 8:16 AM  

Lifting you guys up with fervency right now! Jesus is carrying you all through this right now. Rest in Him, he's in control.

Jennifer Tenney August 25, 2009 at 8:18 AM  

I am praying and praying for Max, but I wanted to give you a little hope from someone on the other side of this- sometimes ECMO is just needed to stabilize a baby and give them a little rest while they recover from some kind of problem. In our case, Dakota was born with some kind of mystery infection that was causing her more problem than she should have based on her LHR, mildness of her condition, etc.. Once she got on ECMO and her body could rest, she improved drastically. Her blood oxygen numbers jumped from the low 30s to over 100, and stayed there. She was able to get off ECMO quickly and then recovered from there and is thriving at home today. Please don't lose hope-this is just a bump in the road and thank God they have the technology to give these little babies rests when they need it.
Love,
Jennifer
Mom to Dakota 12-25-2008
RCDH survivor
Shands/Dr. Kays Alumnae
jennifertrafton@hotmail.com

Jennifer Tenney August 25, 2009 at 8:33 AM  

Oh! For a little more hope, please also look at Olivia's story at www.oliviashope.org. Olivia was another baby with CDH treated by Dr. Kays at Shands at the same time as us. Olivia was on ECMO for almost a month and she had several "episodes" or crashes. She is at home and thriving today. Max will get through this scary time!!!!!! I know it!!!
Love,
Jennifer

Jillian August 25, 2009 at 8:57 AM  

I like what Jennifer said, and I'm clinging to the HOPE that God offers...We will praise Him in the storm. I love you guys, and He loves you more!
Mom

Denise August 25, 2009 at 9:32 AM  

Max will be in our thoughts and prayers today, and every day until he is ready to come home with you!

martha August 25, 2009 at 9:34 AM  

I am praying for ya'll.....

Suzanne August 25, 2009 at 9:36 AM  

Jesus is the great healer (just touching his robe could heal you). Pray he use the knowledge he gave to the doctors and nurses to best care for sweet Max. God also let someone figure out ECMO so we know He is in control of that too. God cares for the birds, how much more does He care for you guys and Max. Peace, clarity, comfort, and healing be yours in Jesus name.

Anonymous August 25, 2009 at 9:41 AM  

Praying praying praying for Max...

Dai

Misty August 25, 2009 at 9:47 AM  

I, too, like what Jennifer said. Just as a friend to Claire and Jordan and someone who has already fallen head-over-heels for Mighty Max, I thank you Jennifer for taking the time to offer some comforting words to this family. Claire and Jordan, Max has been fighting HARD, like a champ all this time, now, he just needs to rest his little body for a bit.

Kim Dodridge August 25, 2009 at 10:00 AM  

I hope you were encouraged by Jennifer's personal experience. It really touched me and I pray that you were given some added hope by reading her personal testimony. I know you are feeling a little guilty about holding Max, but I strongly believe it was part of God's perfect plan. First of all, Max may have needed his Mommy's arms wrapped around him (I'm sure you needed it too); secondly, it sounds like it may have stirred things up a little so that the nurses and Dr Kays were able to react quickly and before Max was extubated. God is is in control and He will always win. Hold on to eachother right now just as Jesus is holding on to you and Max. He will NEVER let go! Praying hard without ceasing!

Aunt Beth August 25, 2009 at 10:11 AM  

Love what Jennifer said-- this paper says that ECMO is only given when doctors think that the heart/lung condition is reversible. Standing in the gap. Love, AB

http://lane.stanford.edu/portals/cvicu/HCP_CV_Tab_1/ecmo_for_parents.pdf

Anonymous August 25, 2009 at 10:14 AM  

I heard about Max and your family through a mutual friend (Christian). I wanted to tell you that my family and I are praying for you all - our hearts are with you as you go through this challenging time, and we offer our prayers that you will all get through this.

Nick, Karen & family

Nicky August 25, 2009 at 10:27 AM  

i will be praying for max all day long. i wish i could give you both a big hug right now.
my daughter claire (as you know) didn't have cdh but she was in the nicu for a long time and had lots of ups and downs and bumps in the road to home. heck- we even had a doctor tell us she would never breathe on her own and she is! so don't lose hope, this is just what max needs right now and our Jehovah Rapha is there with him.
love you all so much.

Shari August 25, 2009 at 10:52 AM  

Your family is in my prayers....healing for Max and strength for you and Jordan.

Shari August 25, 2009 at 10:52 AM  

Your family is in my prayers....healing for Max and strength for you and Jordan.

Jaime's World August 25, 2009 at 11:07 AM  

Jordan,
I am so sorry to read this. I was hoping it would be GOOD changes. I have met some awesome ECMO survivors, so please don't be too upset! Wishing you all the best...remember, Max is in great hands!
Love and prayers,
Sheryl

Timothy and Jenny August 25, 2009 at 11:10 AM  

Praying for you all especially for Maz, that ECMO will give him a chance to rest. Praying that God hold you and Claire at this time. My son was on ECMO for 10 days, it gave his lungs a chance to rest and build up strength.

Jenny (Weston's Mommy CDH survivor -7-9-08)

Anonymous August 25, 2009 at 11:15 AM  

You don't know me, but I heard about your son on Twitter earlier today. My prayers go to Jesus for your little boy. I pray that His will be done and health is restored to Max. I know it's a tough battle right now. May God bless your son and your entire family and bring them peace.

Maxton's Mommy August 25, 2009 at 12:55 PM  

Guy, I am sure you are both incredibly stressed out right now. I didn't get yesterdays update, but I just stopped reading midsentence and said a prayer for Max. I will continue to do so tonight and ask my angel Max to watch over him. I so sorry for the new developments.

Ashley

The Hobbs Family August 25, 2009 at 1:42 PM  

Sending lots of prayers your way! You are not alone!

The Creekbaums August 25, 2009 at 1:47 PM  

May God wrap his healing arms around the three of you.

Leigh Creekbaum, mom to Grayton Creekbaum RCDH diagnosed at birth
5.09.08 - 6.22.08

Ingrid Moore August 25, 2009 at 1:52 PM  

So sorry to learn of this. What a shock! When he was going so well. I hope this gives him the rest he needs and gets back on track soon. Thoughts are with you.

Anonymous August 25, 2009 at 2:07 PM  

Stopped multiple times today to pray for all three of you - for strength ...and peace ...and rest. Remember, God is the same yesterday, today, and tomorrow. He will provide you with what you need. I promise I won't stop praying for your sweet little family.

Tracy Meats August 25, 2009 at 2:26 PM  

Saw a message on facebook to pray for Max....I am sorry Max is having hurdles to overcome. Praying that doctors can figure out what is causing his problems and ECMO will allow his body to rest. Fight Max fight!!

Tracy Meats, mom to Ian, born with a LCDH on 4/3/04

Brandi Vidales August 25, 2009 at 2:48 PM  

I just said a prayer for little Max. I am sorry to hear that he is having more troubles. NICU life is really like two steps foward and one step back. Just hearing your other posts really shows what a fighter he is and he can get through this too. He is a little miracle!!! My sister and I think about your wonderful family all of the time. (Keep fighting Max!!!)

Unknown August 25, 2009 at 3:54 PM  

I am so sorry to hear about this set back. Thankfully Max seems to be a pretty strong little guy! I am praying for Max as well as you and Jordan.

Dana W
#32

Jeanie T August 25, 2009 at 4:28 PM  

You all are in our prayers! What a tough little guy!
Just to offer some more hope along with the other CDH & ECMO survivors, my son, Ryan will be 22 in December. He was born 3 hours afer I knew of his CDH, had surgery immediately and was placed on ECMO in the middle of the night, there was no other option. I believe Ryan was on ECMO for 7 days, it was just what my little guy needed!
Ryan just started his senior year of college yesterday.
ECMO is scary, I know, but it really does help these little ones.
God bless you all!
Jeanie
Mom to Ryan CDH & ECMO 1987 Cincinnati Children's

Chanda August 25, 2009 at 5:10 PM  

Our prayers are with you. Max will get through this. Chanda

*super dude and super dog* August 25, 2009 at 6:24 PM  

I'm so shocked and sorry to hear that Max is on ECMO. I know it's hard to think about, but remember that ECMO is there to let him rest and allow the Docs some time to figure out the next step without being in an emergent situation.

We'll be thinking of you and praying Max's lungs clear out quickly.
-Kellie

*super dude and super dog* August 25, 2009 at 6:25 PM  

p.s. I also wanted to add that Carter's doctors told us they would never put a child on ECMO who they didn't think it would help and who they didn't think would come off of ECMO much improved. Just keep that in the back of your mind.

Kathryn Olmstead August 25, 2009 at 6:26 PM  

We are praying for little Max and for the two of you! The CDH roller coaster is a shi**y ride, but Max will fight through it as will you! You guys are in our thoughts and prayers ALL day long!!

Josie Roberts August 25, 2009 at 11:53 PM  

Jordon and Claire,
I have shared the story of brave Max with all my friends, and they are all praying for him. We hope the three of you can feel the love across the miles.
josie roberts

Marion August 26, 2009 at 10:20 AM  

I have been following your story from the beginning. ECMO can save these little ones. I know how scary it is to have to make that jump. Just know that you are in my prayers and my little Addison is watching over him from Heaven. Many hugs,
Marion

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