Wednesday, April 28, 2010

Quick notes before I fall asleep:

Update:  Chrissie is doing well right now.  She is stable on the ECMO machine and ventilator.  Praying for a peaceful night for all, with progression in the right direction:  FORWARD! 

Praise:  Tonight I asked Chrissie to squeeze her hand into a fist, and she did it for me...TWICE!  Miraculous!  Everyone was encouraged.  She also still cries (tears fill up eyes and pool in eye sockets), which is a very sad sight, but an encouragement that she's still in there.  Because Chrissie responded to commands (squeeze hand), she was able to receive extra pain killer and sedative to help her relax.  (Can you imagine waking up in a hospital bed, still partially paralyzed, with a tube down your throat and a broken sternum that was sawed in two, with chest tubes running from inside your chest cavity through slits in your skin to the outside of your body, with large tubes (cannulas) sewn into slits in your neck that are inserted into your jugular vein and carotid artery?!?!)  Oh my, can't even imagine what's going through Chrissie's innocent mind that seems so violated by this surgery.

Chrissie Compliments:  Hospital staff is always telling us what a strong baby and tough girl Miss Chrissie is.  Most other kids wouldn't have survived what all Chrissie's been through.  Every time they think there's no way she's gonna make it, Chrissie shows them how big and mighty to save her God is.  Praise Him!

Explanation:  Chrissie's Tuesday clotting episode was called SVCS (Superior Vena Cavous Syndrome).  This is complicated to explain.  Basically, they have to keep Chrissie's blood anti-coagulated (meaning thin and not able to clot) so that her blood can be pulled into the ECMO machine and not put a clot into the ECMO machine, which would act like a clog in the machine, which would then NOT allow the blood to get through the machine to be treated (oxygenated and other stuff) and returned to Chrissie's body, which would then take away the ability for the machine to save her life.  However, there are definite areas where Chrissie NEEDS her blood to clot so she doesn't bleed to death.  (Like where they have cut into her heart in various places and stitched it back up...we don't want her to keep bleeding there, but there's no way to tell the body to only clot there so she doesn't keep bleeding.)  So, there's a huge challenge to keep the blood in an acceptable state where it won't clot and clog the ECMO, yet still not bleed so much that she loses too much blood and has too much internal bleeding in her chest cavity.  Chrissie has several chest drainage tubes that stick out of her chest through slits in her skin.  The tubes are stuck down into her lungs and chest cavity so that any internal bleeding and extra fluids will be able to drain out of Chrissie's body instead of pooling up inside of her chest, which causes other bad stuff to occur.  Well, today we noticed that Chrissie's face was turning blue, then it started to turn purple, and then it started to swell and inflate like a balloon.  There was quite a bit of drama surrounding what was happening because it was happening rapidly.  The reason for this was that there was a large blood clot that got stuck at one of the drainage tubes from her chest, which then didn't allow any of the extra internal blood and fluid to drain out the way it needed to.  (Think clogged toilet that's been flushed numerous times and begins to just overflow.  The only way to get it to stop overflowing is to unclog it.)  Well, Chrissie's upper torso and head were filling up with blood and fluid!!!  Her right atrium of her heart was being compressed by the build up of blood internally, which ended up completely collapsing the right atrium, which is the very same area where the cannula (tube) is attached/inserted in the heart for the ECMO machine to suck blood out of Chrissie's heart to then whip it into the ECMO machine to be treated and then return the new healthy blood to her body.  So, the cannula now has this sack (the atrium) that has completed deflated around it, not allowing it to suck blood out of her heart, which means Chrissie's blood can't be oxygenated and treated, which means the ECMO can't do anything to save her life.  (Think of one of those vacuum seal bags where you put food or clothes in, then suck all of the air out with a vacuum.  Great for food or clothing storage.  Not great for a heart!!!)  So, they had to find a way to get the clot sucked out because it had clogged things up and backed up the entire system.  The doctors and nurses scrambled to find a vacuum that they could stick down the drainage tube into her chest to try to suck the clot out, but it was too big of a clot and wouldn't fit through.  (It was like watching female plumbing 101.)  They worked hard and tried turning up the suction and adjusting the vacuum in several ways, and even "milking" the tube (think threading a drawstring through sweatpants waistband), but they couldn't get the clot out.  Next step was to pour a drug into the drainage tube to let it sit on the clot and try to break it up.  (Think Liquid Drano.)  The risk was that if the drug made it past the clot that it could travel into the heart and chest cavity and cause extreme bleeding.  Not good, but a necessary risk to try to save our daughter without opening her chest.  The entire cardiovascular operating staff came to Chrissie's PICU room to be on standby incase they had to open Chrissie's chest in an emergency to save her life.  The drug sat on the clot for what seemed like forever, and the doctors suctioned and tried to get the clot out.  Couldn't get enough of it out to make a diffference.  They were fixing to cut open her chest when all of a sudden, miraculously, the clot broke apart and all of the blood that needed to drain just started pouring out of the drainage tubes.  They ended up getting about a total of 100 cc's out.  Then, Chrissie just deflated and turned pink again, and the right atrium went right back to filling up and looking normal since it wasn't being compressed by the pooling blood.  The doctors were stunned.  (Their words.)  They said it was miraculous.  It was a miracle moment.  At th same time that this occurred, my friend Julie texted me that they said a prayer for Chrissie, and as they said, "Amen", a round rainbow enveloped the sun!  No rain, no condensation.  Just a rainbow of promise smiling around the sun.  Reminded me of God wrapping His hands around Chrissie's heart.  My sister told me that as they said amen for their intercessory prayer, things improved with Chrissie.  My pastor's wife told me that as they said amen, they heard a phrase about mending broken hearts on the radio simultaneously.  Many readers made comments of similar stories. 

Do you think God hears our prayers?  I think there's no longer any reason to ever doubt.  He DOES hear your prayers, and He is moving on behalf of your petitioning.  May God receive ALL of the glory for His mighty miracles.

Comments:  Some of you have shared with me the problems you're having leaving comments.  Don't click on the cute blinking heart "leave a comment" blingy button.  Go down below that to a tiny boring section below the blog post that says "comments" (sometimes it will have a number in front of it, such as 11 comments, meaning that's the # of comments that have been left.)  Click on that boring little simple plain font word that says "comments", and it should take you to the page to leave me a comment.  (Some readers have said that if you refresh your blog just before you want to leave a comment that it has more success.)  Your comment will be emailed to me where I will then "publish" it back to the site.  You can always email me by clicking the "email me" button at the top of the right sidebar on the blog.

Twitter:  Kandi Ann wanted me to set up twitter.  Apparnently it sends texts to your cell phone.  Brent Riggs set it up for me, but I'm not going there to put separate posts or anything.  Brent set it up so that my blog posts would be sent to twitter automatically, so hopefully that will help my twitter fans.  Also, if you want to follow me on twitter, my username is forgottensaw.  (I also saw something that said Lor_Patterson, so that may be something you need to know as well.)  I don't know how all of that works.  Hopefully y'all can figure it out.

Talk Show:  Brent Riggs (Abby's dad if you pray for Abby and Abby's Wish) set up a radio talk show online.  I'm the guest speaker this week from Mon.-Thurs. at 10PM.  You can call in to ask questions live at (347) 677-1517 or you can listen online live or you can listen to previous shows online  here.

Sidenote:  Some of you have asked about Chrissie not being able to open her eyes due to the eye mask.  It's not the eye mask that's preventing her, it's part of the paralytic drug that prevents her from being able to open her eyes.  She can flutter her eyelids, but she doesn't have enough control yet to open her eyes fully.  They use the eye mask to keep her eyes hydrated and to keep them from getting too dried out.

So grateful to God for His miracles, His presence, His love, His grace, His mercy, His healing hand, reaching out and mending broken hearts.  (Love the song The Healing Hand of God.)  There are so many great songs out there on K-LOVE right now with specific phrases speaking of healing broken hearts and giving new life.  Lovin' having those songs minister to my heart, and God always seems to put the songs in the perfect time and place, even for some of you as you pray for our Chrissie.

We are grateful and humbled by this army of warriors lifting our daughter up to the Throne.  He's holding her in His healing  hands.  Keep praying...

18 comments:

Ang said...

Good Morning~Just had to smile as I read your last post. During my devotional time this morning, I was reading in Ezekiel as he tries to describe the glory of the Lord. He says as he describes the light around God, "Like the appearance of a rainbow in the clouds on a rainy day, so was the radiance around him. And, in Revelation, as John tries to describe the throne, "A rainbow, resembling an emerald, encircled the throne." In my footnotes in Ezekiel, it reads, "The four living creatures and the four wheels are powerful pictures of judgement, yet the rainbow over the throne symbolizes God's never-ending faithfulness to his people." Never-ending Faithfulness~simply amazing, isn't it? Continuing to pray here in central PA.

Isaiah 40:29 He gives strength to the weary and increases the power of the weak.

In Christ's Love,
Angie

And patiently waiting... said...

Lorraine,
God ia an awesome God!! I was wondering how her lungs are doing? Do the clots and effect them? You do an wonderful job telling us about everything!! My family keeps praying!! My kids know about Chrissie being so sick and we pray for her!! We talk about her often. What are you going to call Wednesday? Praying God contines to heal and praying God for peace and comfort for you!!
Tammy

Looking Up said...

Thank you so much for keeping us updated. You must be compeltely exhausted. I prayed this morning for Chrissie's complete healing, & for you to be able to get some rest.

Mom to 9 Blessings! said...

BIG SMILE this morning!

I love your faith and strength!

You are so beautiful in His sight Lorraine! I pray blessings upon your whole family!

Praising God for more miracles on Chrissie's behalf!

Love,
Jill

Robert said...

God has truly burdened my heart for your precious Chrissie. Know that I am praying fervently and often. Let's call today "Wow Wednesday". Can't wait to see what God has planned for today. Prayerfully a MUCH more calm day with lots of positive "Wow" stuff.
Blessings,
Peggy

Suzette said...

Praying for a peaceful day for all of you.

Not to us, oh God, but to your name be all praise and honor and glory!

Kristi said...

Found you via the NHBO "Whatever Wednesday" post. I am praying for your precious daughter and will be spending some time going back to read her story.
Just wanted to let you know that one more Mama was on her knees for Chrissie.

stephanie said...

Amazing! The power of prayer! I am praying for Chrissie!
God Bless!

Joy Portis said...

Just wanted you to know we continue to watch in awe of all God has and continues to do through beautiful Chrissie and the faith of your family! Praying for you all this morning and can' wait to see what the day brings!

Blessings
Joy

Joy Portis said...

Just wanted you to know we continue to watch in awe of all God has and continues to do through beautiful Chrissie and the faith of your family! Praying for you all this morning and can' wait to see what the day brings!

Blessings
Joy

Lisa C. said...

I came to your site last night from a prayer request on another blog community(mckmama). I began reading about Chrissie and then your other kids. Your sweet family is amazing. I will keep reading about your adoptions as I can, and I will certainly keep praying for Chrissie. She is so beautiful. My 5 year old son, Timmy, said "Tell the little baby that I love her and I hope she gets better.".

Anonymous said...

We are praying for Chrissie!! She is one strong little girl! I have been keeping up with your blog for a week now and I am so amazed and in aw of the "coaster ride" you guys are taking. Your family is a blessing to each other and to others out there. Lorraine you are one tough woman of God, you're a warrior for us all...God Bless and know we are praying at this end for you.
The Phillips Family

Anonymous said...

Blessed be God forever. Thank you Lord for all you've done to save Chrissie. We are all totally at your mercy and your willing servants. Lena. No need to write me back. I'm reading your blog. LNS@centurytel.net

Wendi Taylor said...

Oh my gosh... so glad to hear of her miracle yesterday. She's in a lot of people's prayers including mine. Praying that things continue to improve for her and that she's home with her siblings, healed & healthy real soon.

Connie said...

Love it that God is working in such amazing ways. What is even MORE amazing to consider is that He loves each of us in that tender way, even with our weaknesses and "issues." I've seen God work in the hearts of my kids and heal them--even though their hearts are broken in invisible ways. God hears us, and answers us. Totally amazing. So glad Chrissie is hanging in there. Praying, praying, praying....

stew said...

Lorraine
The wife and I have been watching Chrissie's journey at the hospital as we have a 8 year old who's heart is messed up also.
We have decided to not put her through the operation as her heart doctors have told us that we could fix her heart but what next we fail because the heart is now fixed.
He has told us that she and her heart and body have adapted to what she has and at her age it is to late to mess things up as we could very well loose her.
As it is she will have a life until she is in her 20-30's depending on how long she can deal with her heart of holes and reduced ability to deal with reduced oxygen laden blood. Life is a challenge even for those of us who are "normal" what ever that means anymore.
May all you wished for with Chrissie and this operation come true for you and may the wishes of our father in heaven do as he has intended with this precious little life and you and your family as this is all part of his plan and we are just the players in his grand scheme of life here for us and all that come here and get to return home on day to answer his questions of what we did with our lives he gave us here to learn the things we needed to learn while hear and to grow from the events.

LIN said...

Hope Chrissie is doing well this AM. I knew there would be numerous prayer stories from yesterday,I have one too, I will email it to you. Praying for you all.
Lin from RR

Michelle said...

IDEA:

since KLOVE is ministering to your family in such a fantastic way right now, and most Christian stations (at least the 3 we have here in D.C.) rely solely on donations & what they are paid for commercial space, maybe once Chrissie is better, we (you & your blog readers) could arrange some sort of fundraiser.

maybe people can donate in Chrissie's name, or we can have blog readers donate things to be raffled or silent-auctioned off.

i know that is WAY down the road, you can't even BEGIN to think of it now, but just wanted to put that out there.

(just to be clear, i have no connection with any radio station... it just occurred to me while reading your post & remembering how often the stations here in D.C. are asking for help from their listeners.)

- michelle

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