Evie is basically back to where she was this morning before the ECMO malfunction. She is stable at a flow of about 330, and we're told they plan to try her at 300 again tonight. Just now, before we left her room her blood pressure looked great for a long period of time so we are guessing that reducing her flow should go well. However, the true test will be tomorrow when they plan to "trial" her off of ECMO, meaning that they will turn the flow down as low as possible and watch her heart on an echo cardiogram. The goal is to hopefully take her off of ECMO soon and increase her medications to help her along. We would be thrilled if they were able to do this, because we want her off of ECMO ASAP. It is saving her life, but also threatening her life (this morning's incident is a perfect example).
Our emotions today have been very confusing. When we found out that her troubles this morning were due to a temporary malfunction of ECMO, we were both overwhelmingly relieved and angry that it ever happened in the first place. Then, when she quickly returned to stability, we should have felt good again, but it is hard to go from preparing for your child to die to accepting that they're stable. It was a difficult day, but we capped it off with some friends who brought us Thai food, and helped us talk and laugh a little bit.
For the morning, the best case scenario is that the doctors feel she is ready to be off of ECMO. Please pray for that miracle! Please also pray that, in any case, the doctors will have the wisdom to take the best course of action. Thanks to everyone for your support!
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9 comments:
Matt and Nicole, It has to be so frustrating what you are going through.I really cant imagine the stress. I hope things go much better tomorrow.I'm still praying everyday for her full recovery. You two take care of yourselves.I wish I could do something to help.I love you guys, Aunt Carol
Dear Matt and Nicole,
My prayers are with you and little Evie.
Ps 139: 5 "You have enclosed me bedhin and before, and laid You hand upon me."
Ps 139:15,16 "My frame was not hidden from You, When I was made in secret, And skillfully wrought in the depths of the earth; Your eyes have seen my unformed substance; And in Your book were all written the days that were ordained for me, when as yet there was not one of them."
Our good Lord knows all that is happening to Evie and in Evie. He loves Evie so much more. He will see her through no matter what the outcome may be. He also know the depths of pain and helplessness that you're feeling in the face of such uncertainties. But one thing is certain, God is with you no matter what happens.
Have courage and faith in the Lord.
hi Matt and Nicole - You can ignore my facebook message. I found your website for Evie. What a roller coaster of emotions. So many unanswered questions. May God be your peace in the midst of the chaos. love and prayers, Johnna
Praying that all goes well today ...
The Baum family
May all of God's healing resources be at work for Evie. May the doctors, nurses and therapists have the wisdom to know how to best care for her, and may Evie feel surrounded by all of the prayers that are being raised on her behalf.
We're with you guys in spirit and prayers today.
Kishlers
Dear Matt and Nicole,
We have never met, but your story as prompted me to prayer, recalling a similar situation we went through with our first daughter. My God be with you.
we count it a priviledge and a blessing to hold you in constant prayer.
How precious is your unfailing love, O God! All humanity finds shelter in the shadow of your wings. Psalm 36:7
I thought of your little family when I read this today.
Continued prayers... NCoyle
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