Saturday, April 24, 2010

Paralyzed...

OK, now is a good time to pray for Chrissie.  In the next half-hour or so, the nurse is going to turn off the drug that paralyzes Chrissie.  She's been on this drug since her first battle with death on Monday afternoon, April 19.  They have not allowed Chrissie to have a single chance to move any part of her body, not even a toe in six days.  Chrissie has been on a drug that completely and totally paralyzed her (purposefully) as well as very strong pain meds and sedation meds.  They need to check to see if there are any underlying seizure disorders with Chrissie that have been masked by the paralyzation.  It's time to begin weaning her from some of the many medicines that Chrissie has been on for the last 6 days.  They will keep her on the ECMO, which means she's intubated, which means she won't be able to talk.  Once Chrissie is no longer paralyzed, if she's able to move on her own, I have a feeling the first thing she's going to do is start pulling at the tube that's shoved down her throat and trying to rip the numerous tubes and IV's out of her body.  Not to mention that Chrissie's chest is still open!!!

The nurse can increase her pain and sedation meds if necessary.  Dr. Kupferschmid said she may not wake up for a month, so it's time to see what kind of brain function Chrissie has at this time.  Keeping her body temp at 92 degrees and her body paralyzed preserves the brain as much as possible, so today they spent the day warming Chrissie back up to her normal body temp of 98 degrees Farenheit.  She is now there.

Chrissie's day nurse, Bill, had Chrissie on one of his shifts a few months back when she spent a night in the PICU after a heart cath procedure.  When he saw the orders today to turn off her paralytic drug, he was praying he would be GONE before they turned it off because he's seen what our Serbian Sensation is made of!!!  He did NOT want to have to see her fighting all of the tubes, IV's, nurses, etc.  It was quite humorous, but it also broke my heart that our little princess is going to have movement without the ability to talk or cry or communicate.  She may be able to open her eyes and look into our eyes for the very first time since she was wheeled away to surgery on Monday morning, and she won't be able to scream the words, "MOMMA NO LEAVE ME.  MOMMA LOVE ME!!!" that I so long to hear.

Instead, she will have to be restrained and strapped to the bed to keep her from removing all of the tubes that have invaded her body.  Oh.my.goodness.  This is going to be hard.  And bittersweet.  We will be so encouraged by movement and response to commands such as "wiggle your toes" and "blink your eyes", but terribly hard to watch our daughter want to talk to us and not be able to. 

Please pray for our Serbian Sensation.  Lots to pray for now. Grateful for the army of prayer warriors!!!

This is Chrissie resting peacefully in a paralyzed state.  The red tubing to the right of the bed (and running down Chrissie's chest) is Chrissie's blood that is being suctioned out of her body by the ECMO machine, then filtered through the ECMO where it's oxygenated and the CO2 is removed, then it returns the blood to her body.  Oh my, when this girl wakes up she is NOT going to be happy!!!

This shows all of the medicines that Chrissie is on.  (All of the green and gray boxes hanging from the IV poles are her meds.)  She has 3 IV poles, and the nurses were commenting that the poles were going to fall over if they had to hang another medicine on there!!!  She also has several IV bags, and they inject platelets and a few other things by hand. 

Chrissie's Favorite Things:  Baby Katie, her favorite Hershey's chocolate bar (which is wrapped in a "pray for Abby" wrapper, who Chrissie prays for often), her tiara, and her Jesus Loves Me book.

PINK FINGERS!  They're usually really blue, but the ECMO is keeping her blood oxygen around 98%, which means pink fingers and fingernails.  When K-LOVE played Chrissie's song "What Faith Can Do" last night (in dedication to her!), the nurse commented on how pink Chrissie's fingernails became!

We love you, Chrissie, and we pray you'll be dancing in your princess dress at Forgotten Saw Ranch very soon, sweet girl!!!

36 comments:

Jewels of My Heart said...

Ohhhhhhhhhhhhhhhhh, I simply cannot find the words to say..... but I will be praying!!!!!!
Speak the word Father God and she will be healed.....
God's healing,
Daleea

April said...

Your precious baby has been on my heart for days now. I can not get home from work fast enough to check your blog and the miraculous works God is doing in your sweet daughter's life. I will continue to pray for our Father's will for Chrissie's life and for continued strength for you, your family, and all who come into daily contact with you. Praise God for the testimony your family is providing for this world. "The greater the test, the greater the testimony"

Elissa said...

I've been stalking your blog all week and thought I'd finally leave a comment and tell you another adoptive family in San Antonio is on our knees for your entire family. Thank you Jesus for upholding this precious family. Thank you for conquering death and vanquishing Satan so we can have no fear!

Joy said...

You do not know me, but I am praying for your little girl in Alabama.

Kathy said...

Just wanted to let you know that I'm praying over here in Australia! I've only been following your blog for a few days but so glad that God brought me to it. Kathy(mum to 5 including a couple of beautiful adopted chinese kiddos)

gena said...

I have chills remembering this same moment with my son. He was so scared when he "came to". Please put on the music, and be there whispering in her ear as the fog starts lifting. We just kept reassuring him over and over and he says it made the world of difference. He definitely remembers snippets from those moments !

We're turning the prayers on big time over here.... Lord, hear our prayers !

gena in nj

Captivating Staging said...

Guys, this is the first thing I do every morning and of course many times during the day and the last thing I do at night... check on Chrissie. I know YOUR Healer. I cannot imagine what the 22 was like for you both. Your posts are so inspiring. You guys are true champions on the road of life. We are praying without ceasing. I have everyone I know here praying as well as my family in Arkansas... God is able to raise up your precious Siberian Sensation so that she may "declare the works of the Lord". We aren't JUST praying, we are believing and Calling it so, in Jesus Name!!!

Amy L said...

Praying for your precious baby girl, may God heal Chrissie and comfort her. God loves her so and He knows you do too. God Bless you!
Amy

Suzette said...

Praying and believing for healing from our God who is the healer of broken hearts. Asking God to give you strength as you watch her go thru this.

Rachael. said...

Praying right now!!

kate said...

Praying for that sweet girl right now. Praying for peace. But I have to ask- why do they do this at night? I mean during the day seems to make way more sense. :) They like to keep you on your toes! We are also praying for widsom, strength, and peace for you. My 4 yr old daughter keeps asking if we can invite Chrissie over to play. She can't seem to understand that she is in the hospital. She says, "I know, but when she gets home, call them and give them our number and we can have her over to play." She is insistent upon it. We don't even know you, but for some reason, she really wants her to come play. :) So Annika is praying for her too! She wants her well so she can have a playdate! :)

Kat said...

God is so much bigger than anything that can ever take place. Chrissie is so obviously His and His beauty is in her even as she fights. Praying with the knowledge that God is SO much bigger than this.

KimL said...

Oh Lorraine, how I feel for you. Last year, when my only son had open heart surgery at the age of 3 months, it was the most difficult thing that I have ever been through. I will definitely keep you & your family in my prayers.

Anonymous said...

We are lifting up your precious daughter in prayer and will continue to do so. God is mighty to save, and His compassions are new every morning! Praying for complete healing and restoration for Chrissie and for peace and strength for you and your family. It is a privilege to pray for your beautiful little girl.

Suzanne and Michael
Grace Covenant Church
Arlington, TX

1st TIR Company CO said...

Praying right now and through the night. We may get to see how strong she is right quick! ;-)Trust that the nurses will be able to manage any issues - ICU nurses know their stuff. Still praying...

Mary said...

Be assured of my prayers for her right now. This is tough to go through, remember Footprints in the Sand poem? He's got you all in His Hands, He has Chrissie in His Hands. He is carrying you all. He is so much stronger than any medicine! <May God bless you all. Your faith is an inspiration to me. Keep strong. Don't give up. Never give up.
God bless, Mary @ Cheerios

Kevin and Krista said...

My whole church small group and I are praying for Chrissie in Charlotte, NC.

I can't imagine as her parents, what this is like. So glad Chrissie is a fighter. So glad God is holding her. So glad He is in charge.

Blessings to all of you,
Krista
adoptive mama of 4

memorysdaughter said...

My name is Sarah and I'm a college student from Michigan. I have been keeping Chrissie in my prayers since I was first directed to your site by another blog I read.

I work as an aide for a young woman on a ventilator, and yesterday and today my job has consisted of helping her through her day - getting dressed, personal hygiene, work, homework, etc. But every single step I took, every single motion - I gave it all up to God, for Chrissie.

I am still awake at almost midnight here and I am still giving all of my thoughts, all of my heart, to God, for Chrissie.

I want you to know that I am holding strong for you and for Chrissie through this.

God bless you, and God bless Chrissie. I know He is holding her dear.

Anonymous said...

Oh, Mama! I don't even want to imagine Chrissie in that state. I have a strange feeling, but trusting in God's will. I love you and miss you!
Mattie Patterson

Anonymous said...

Could not sleep, up checking on things... praying. God is good.

-Andrea

Debi said...

Praying that God's perfect love would cast out all fears. A pray the peace of the LORD over Chrissie, that when she awakens, God would have already explained what was going on and He is with her. Praying a mighty covering of God's protection over Chrissie. Praying that when she is ready and it is safe, she would be able to move. Praying that the equiptment and tubes and IVs would not make her afraid.
"God, please prepare Chrissie for what she will face in these hours and days. Strengthen and prepare her heart to beat. Fill her lungs with clear air. Allow everything to function as it was designed.
Fill her mind with your perfect peace as she awakens. Comfort her with your presence. Wrap Your strong arms around her and keep her from all fear. Help her to understand and trust and have a supernatural strength that allows her to endure hard things. Thank you for Your love for Chrissie and for bringing her home.
Please be the strenth of her parents, Lorraine and Matt and fill them with your perfect peace and understanding as they walk through this with Chrissie. May their presence bring comfort and peace.
I pray for he wonderful Doctors and medical staff, that you would guide every decision through them and renew their strength. In Jesus' name, Amen"
Love and hugs and prayers,
Debi

whatever to us said...

Prayers going up from here as well for your sweetpea....

SassyAgapi said...

prayed for Chrissie today!

Shannon said...

Lorraine,
I am a Mama to a precious fighter of a heart baby. I walked through some of this in August and am praying for you. If it is helpful, Georgia was very distraught when they brought her out of sedation and what helped her the most was when they lowered her bed so that I could get my face right up near hers...she put her hands on my face and calmed right down.
I am praying that the Lord saturates that ICU room and Chrissie's heart with supernatural peace that passes all understanding.....
Hugs & Prayers,
Shannon

my3 kids said...

We are also praying for your beautiful girl all the way from Canada...sending big hugs your way.

Janice

Jennifer Truitt said...

I just recently found your blog through the Riggs Family. We have faced our 3 year old daughter going through cancer. I want you to know I pray for Chrissie every time I think about her! My husband is a pastor and we will have special prayer for her at our church in the morning as well! Trusting the GREAT physician to keep performing miracles!!

Anonymous said...

My wife and I will be praying for Chrissie through the night. Oh how we hope and pray that God will heal this precious child and let her be a powerful testimony if God's power.....

Anonymous said...

I'm praying for you constantly, Chrissie! May our Jehova Rapha touch you right now.... And may He continue to give your precious parents strength, endurance and peace!

I know what I'm doing. I have it all planned out--plans to take care of you, not abandon you, plans to give you the future you hope for. - Jeremiah 29:11 (Message)

For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus. - Phil. 1:6

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit - Romans 15:13

Mel said...

More prayers being said right now Lorraine!!

God please bless Matt and Lorraine with peace in this difficult time. Be with Chrissie as she "wakes up" and help her to listen and respond to the things that she is asked. Continue to guide the hands that care for her that they will make the right decisions. Lord God, let your will be done. Amen.

Mel said...

Father be with Lorraine and Matt, give them peace as Chrissie "wakes up". Help her to be still and to understand that she needs to leave the tubes alone so that she can be well. Lord, let her responses be deliberate. Please continue to guid the hands that care for her. Direct them to making the right choices for Chrissie. Let your will be done... Amen.

God bless you Lorraine and Matt. And God bless your sweet little Chrissie.

LedaP said...

Praying for you and your family for healing and strength. You are amazing. I can't even fathom facing this, but glad your faith is so very strong. Leda ( mom of 2 awesome sons, and two special needs children from China).

Anonymous said...

I have been following your blog for a few months now and can remember when one of Chrissie's surgeries was scheduled for January 25th (which was postponed), but I wrote it down in my planner to PRAY for her and the doctors!

Ever since then I have been reading your blog and truly feel as if I know your family personally. The blessing of technology. I know many are praying for you, regardless if they every get to verbally express that to you!! (as I say 'you' I mean your whole family!)

I am simply inspired by the encouragement you pour out even in the midst of everything you and your family are going through. You testify 2 Corin 1:3-7!! Thank YOU!

Chrissie's name, CHRISTyn Joy, continually resounds in my mind, knowing that God has placed her on my heart to continue to lift her up in prayer. May your thoughts and doubts not limit His POWER! He is sovereignly reigning in your lives, may your confidence and trust come from HIM, may all fear be washed out from you when the heat comes, and goodness you are bearing fruit as you glorify His name (Jer 17:7-8)!

Praying this over Chrissie, you, Matt, and your family!:
"Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and heart may fail, but God is the strength of my heart and portion forever. Bust as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds" Ps 73: 25-26, 28

Praying, praying, praying!!
Jillian

jones family said...

I will be praying all night!!! even while I am asleep!
love, savannah

Sarah said...

Praying for Chrissie... Praying for peace to surround you all. Praying for the nurses and doctors as they care for your sweet girl. Praying, praying, praying!!!

Anonymous said...

Praying for your sweet baby girl! Lifting her and your family up in prayer right now.

Karin said...

I am praying for your precious girl. She looks almost exactly the way our Kate looked just one year ago (minus the ECMO machine). The sight of those chest tubes and all the machines and meds next to the bed bring back many memories. I check your blog many times a day and I am praying, praying that all will go well when it is time to take her off the ECMO. Praying for your peace and strength as well. We lived in MI when our daughter had her surgery, but now we live in Boston--so prayers coming from New England. :) Hugs!!

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