Every single test they have run has come back within normal ranges. She shows no signs of infections or typical abnormalities. Regardless, she is improving dramatically. We are so thankful for her obvious resilience. As organ defects or failure and infections are seemingly being ruled out, the Doctors are leaning towards metabolic/genetic problems and have ordered many more specific blood tests.
Yesterday they gave her a more complex IV with simple protein. Today they will continue to decrease her phentenol (?) and other medicines that are keeping her sedated. She has obvious periods already where she is "awake" i.e. responsive to touch and sound and tries to open her eyes a little.
Please pray for me as I am having a very hard time with the idea of her waking up. It is so hard to even see her like this and I really need more strength to deal with knowing she may be aware of all the needles and tubes in her. Throughout the morning, a little toddler a few doors down from us, who I have heard wimpering off and on the last few days, is alert and crying in obvious pain and confusion. It is truly unbearable and not even my own baby. There is so much heartbreak and sadness here.
Before I started this post, I sat down and read all the posts on other blogs where so many of you have notified your own friends and family of our situation. I am sure it may be redundant to some who read a lot of these blogs, but I want you all to know how encouraging it was to me to know that you are soliciting prayer on our behalf. We need every one. The doctors are amazed by how quickly she is bouncing back in so many areas. Regardless, they still need wisdom to figure out why this happened so it doesn't happen again.
However, things slow down here on the weekend. We will most likely continue to wonder a lot of things until Monday. Please pray that fear of the unknown will not become overwhelming. Pray also that we will get rest and know how best to balance our time as parents of children in two different worlds right now.
8 comments:
You all are in our constant prayers. We love you guys!
I'm so glad to hear that she has had improvement over the last day. Praise the Lord for that! I will be praying that the Lord will help you to take this a day at a time, trusting Him to provide the strength and wisdom for you and Brandon to care for your precious Evelyn! Also praying that the doctors would have wisdom and clarity of mind as they seek the cause of all of this! Keeping you in my prayers today!
Oh Grace, the heartbreak of watching your child in this kind of situation is awful. I am praying for all of you.
I cannot imagine - it is heartbreaking to watch someone else's baby go through that - to see your own little one in pain. :( I'll keep praying for you, for strength from the Lord. Love you.
Hey grace, just wanted to let you know that we are praying for you. I can totally understand where you are coming from. Some of those tubes are so hard to see, but yet they are so necessary. You will actually be really glad she has a central line, I wish Elliot would have gotten one sooner. I know you have alot of family and friends around you, but if you need someone to talk to I'm here.
Angie
Brandon and Grace,
Please know that we are praying for you and share your burden. We would pray for the doctors and nurses as well that they may be touched by our Savior through your being there. God holds tomorrow in His strong Hands and will give grace for each step of the way!
The Schiete Family
Praying for you all, Grace.
Grace - Sunday morn I asked the group to be in prayer. I will be using your blog to send updates unless I hear otherwise. Praying for you all, ken
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