Is there cause for concern

Pin It Yes, there is. 

Ivy has been asleep for a very long time. And while we had moments  seconds of what seemed like she was aware of her surroundings, nodding yes and no, even if for just a few seconds, today her eyes still wander when lifted open. She has a very invasive bi pap mask on that is blowing a hurricane in to her and she does not protest it or even reach for it. They say that the drugs are in her tissue and she could just need more time. However they were very quick to comply to my request of Neurology coming out to take a look at her. I'm so thankful that they include me in every decision and every plan. They never round without me, if I run to the restroom (there are none on in her unit), they wait, knowing I will be here. They always ask me if I have questions or concerns and they always spend as much time with me as I need.
She is getting an Echo right now, just to be sure all is well with her heart, and she will get a full eval from Neurology this afternoon. 
A music therapist came in today and played for her. Thank you Jen for setting that up!!! At PCH they use classical music as therapy for the healing process from day 1. Here they have no such thing. And PT and Child Life were in the room from day one too at PCH. Here we have not seen Child Life or any therapists at all and it's been 2 weeks. I think that is odd for the #1 hospital in the world, but we know they get that rating from the medical aspect. And it is well deserved!! 

Due to not breathing more than just shallow breaths (since she is in this deep sleep) her right lung has collapsed. It is a little better this morning, but still the bottom half is fully collapsed. 

Her body is not urinating on its own, she is requiring a cath again. She was without it for several days but after going all day Monday without making a wet diaper, they put the foley back in Monday night. 

She does move her arms and legs, she does turn her head. This happens every 3-4 hours for a few seconds, then back to sleep with no movement she goes. 

So my prayer requests today are obvious and desperate.

I have sobbed with a very heavy heart this morning. My little girl has been through so much. And she can't wake up to breathe on her own! I'm crying out to God today. I'm asking that He agree that she's been through enough. That He breathe life back in to her little body and reignite her spirit! That we see Ivy come back to us, today!  

My prayer request to all of your are obvious.
That Ivy would wake up.
That from a neurological view, there is no cause for alarm.
That God would continue to breath life in to her lung and her body.
And that God would continue to give me the strength that only He can provide. I have nothing left to give, but every day He makes me new again. I am empty at 1am as I lay my head on my pillow but at 5am I rise anew again. Filled with the strength to get through one more day. 

If you feel led to leave a comment today. I ask that you direct it towards what you will be praying for or towards Ivy. 
Today I just don't have the strength to read things like.. its going to be fine, you can do this, your strong...... 
Until you have sat right here in these very shoes in this very situation at this very moment...You have no idea. 

I will be in great prayer today and my faith will be renewed and I will be reminded that when I am weak He is strong. For faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

Pin It

The "Little Candy Corn" Update!!

Pin It Diana here, having the privilege to scribe for my friend Mary again.....  She wanted me to share that Ivy Joy was taken off the ventilator at 7:20pm and she has been sleeping since!  So many reasons to rejoice over this great news..  While we are giving thanks, let's put at the top of the list an astute and amazing nurse and a compassionate surgeon who truly cares about their special patient!!

Team Ivy - It's time to stand in the gap once again for our favorite patient!!!!!!  Ivy is struggling to wake up..  Partially due to the heavy meds she has been on!  There are two other tricky parts to this..  One her pace maker, and two her lungs...  Can we storm the gates of Heaven together to ask God to help Ivy get over these obstacles...  This baby has not had an easy go at it..  And, we are praying for the path to be cleared for her to HEAL!!!!!

Thank you for lifting up this amazing little girl..  And, don't forget her precious Mama too who is living this 24/7 and holding her breath for her tiny miracle to turn the corner towards a complete recovery!!!!

More soon!!!!

Blessings,
Diana
(For Mary) Pin It