Friday, April 30, 2010

Fantabulous Fever-Free Friday

A cardiovascular pediatric ICU nurse left the following comment today on our blog, and I thought that someone out there might need to read this as a "pro" evaluates what is happening with Chrissie and validates that she's nothing short of God's miraculous hand:

"You do not know me, but I am a CVICU [cardiovascular ICU] nurse at a pedi ospi [pediatric hospital] and came across your blog on another blog asking for prayers for your sweet Chrissie. Understanding everything that you have written from a medical perspective, understanding everything about ECMO and TPA [the risky drug used to dissolve the clot] and hemorrhage...I am here to tell you that your sweet daughter's life is a miracle! Praise Him, who has breathed the breath of life into her little lungs once again. HE is right there with Chrissie, all of the time. Every time a doctor or nurse says "that can't be," Chrissie shows them: "then you don't know my great and powerful God!!  Sending you love, encouragement, and big heart prayers from fellow cardiac people in Dallas!!!! "  ~Libby

Praises to report on this Fantabulous Friday:
  • Chrissie has remained fever-free all day today!  (We are awaiting several cultures to determine if there's any infection/bacteria anywhere, but so far, no more fever.)
  • Chrissie has remained off of a powerful drug since mid-day called Epinephrine (I think...they call it "Epi"); it's the drug that works similar to adrenaline, that tells her heart to beat more rapidly.  Chrissies' heart rate has stayed above 99 (or higher) all day, on its own!!!  She also doesn't even have her pacemaker hooked up and she's been staying in perfect "sinus" rythm all by herself!  (With God, ALL things are possible!)
  • Nurse Steven (who adores Chrissie and takes excellent care of her; his nephew has had 3 open-heart surgeries) "washed" the back of Chrissie's hair.  The back portion of Chrissie's head/hair had laid in pools of blood for days, then it dried, and it was in horrendous condition.  Her hair was matted in dried blood that was worse than when we accidentally put a fluffy stuffed animal into the dryer and it mattes into a melted, tangled mess.  I didn't know how we'd ever get it all out, but today Steven worked so lovingly on Chrissie's head and hair, scrubbing it and soaking it with hydrogen peroxide and an antiseptic shampoo/wash until he was able to comb out all of the dried blood.  And he did all of this while I was napping!!! :-)  Thank you, Steven!
  • Chrissie has had 2 bowel movements already!  They started the intestinal tube feedings yesterday, and she is tolerating them well.  Her intestinal tract has processed the food and eliminated it via a "poopy"...twice!  This is huge!  (And, Steven changed her first poopy diaper for me while I rested...thank you Steven!)  The night nurse changed the second diaper with me by Chrissie's side (it's tricky moving her because her sternum is still sawed in two and stapled into position...OUCH!), so I talked to Chrissie while the nurse changed her diaper.  Chrissie cried, but I think she was crying because she was so embarrassed to be wearing a diaper!  She's a BIG girl, not a baby!!!  I assured her that it was OK and it was a GOOD thing that we were celebrating her poopy diaper and SO proud of her!
  • Chrissie's sats have all stayed in an acceptable range.  Lungs are having a hard time, but Chrissie's still bossing them.  It's hard to boss disobedience away though, especially when the lungs are so ornery! Respiratory therapist had to go up on the oscillator (specialized ventilator that puffs air down Chrissie's throat/airway and into her lungs) in order to get oxygen sats where they want them, but they still have lots of room to play with it incase things go downhill.  They've been giving Chrissie an asthma type of medicine to open her airways, and they've been suctioning out lots of yucky stuff from her airway/lungs throughout the day.  Not sure if that's good or bad, but it is what it is.  There's been some old blood coming out of her lungs, but tonight looked like there could be some fresh blood.  That would not be good.  Pray for Chrissie's lungs!!!
  • Mommy got to take several naps today while Chrissie rested.  Today is the first day I've been able to nap.  I was exhausted, and so grateful for my 2 big naps today!!!
  • Dr. Porisch emailed me and she and the medical heart mission team are all safe in Iraq.  I was SOOOO happy to hear from her!  Please pray for their team to accomplish much for God's glory and be safe and healthy, etc.  I think they are returning May 9.
  • Dr. Porisch requests your prayers for Chrissie's lungs to heal and for no infection anywhere in Chrissie's body.  She and her entire team are praying as well.  Gotta love how God works.  We are so blessed by Dr. Porisch.  More than she'll ever know.  (Love ya Dr. P!)
  • God has blessed us with a wonderful plan to help reunite our family while Chrissie is hospitalized and Mommy stays in San Antonio every day and night by Chrissie's side.  A total stranger who is now a friend :-) has paid for our family's camper to stay at a local campground near Seaworld.  Our kiddos will be coming to SA every weekend to have fun family time.  My mom (Chrissie's Nana) will be staying by Chrissie's side all day Saturday so that the rest of our family can hang out and go to Seaworld and enjoy being with one another.  Nana will be spoiling Chrissie in the hospital with lots of attention and stories while I get spoiled by the love of my other 5 precious children.  Perfect!  So excited to love on my other kiddos.  I miss them so much!
  • So many of you have inquired about helping our family.  Many of you have offered to give financially to help offset the medical costs we'll be facing as well as the crazy living expenses of having us at the hospital all of the time.  My husband has been gone from work for 2 weeks, but hopes to return to work part-time next week.  In an effort to make things easy for you to donate to us (instead of having to always figure out what to tell you), I decided to just bite the pride bullet and put a donation badge on our blog (look over on the right sidebar for the "Chip In" badge).  All you have to do is click on it (where it says "Chip In") and it should take you to a donation page that will go directly to our Paypal account to be utilized for all of Chrissie's hospitalization expenses as well as the additional expenses our family is incuring during this time.
  • So many of you are providing meals for our family both at home and at the hospital!  THANK YOU!  We are so very blessed by all of you who are loving on us and showing how the body of Christ works to lift one another up and serve one another with joy.  We are humbled by your outpourings and offerings.  Thank you!  Some of you who are in the SA area have asked how to "sign up" to bring a meal to us, and the same stranger (now friend, Cristie) who paid for our campground site (and also was organizing a fundraising effort for our family as well as trying to set up a trust account until I decided to just do the "Chip In" donation via Paypal route) also put together a Care Calendar site specifically designed to provide meals for us at the hospital and to our family while we're camping together on the weekends.  If you'd like to sign up to provide a meal in SA (for us at the hospital or for our family while "camping" in SA), please email Cristie at and let her know your name, location, how you know us and she'll give you the login info for our hospital care calendar.  If you'd like to sign up to provide a meal for our family during the week back at our ranch in Wimberley, please email Brenda at and let her know who you are so she can give you the ranch care calendar login info.
  • Our princess is resting soundly and I'm going to sleep soon, too.  It's been a fantabulous Friday, and we are most GRATEFUL for your faithful prayers. 
Be sure to thank God for His many blessings He has so graciously bestowed upon us!  Praise Him from Whom all blessings flow!
PS  Someone asked about getting a special bed for Chrissie that will rotate her automatically, but it's not an option while she's connected to the oscillator/ventilator because of the tube running down her throat.  It has to be adjusted manually when/if we move Chrissie as it must be kept in a perfect position in her throat, which messes up if Chrissie is moved, even an inch in any direction.  Chrissie is sleeping on sheepskin and foam "egg crates" to help eliminate pressure sores, etc. Thanks for your suggestions, and if/when Chrissie gets off the vent, this will be a possibility! :-)

All is well here in PICU Rm 1 with the Serbian Sensation! Praise the Lord for His mighty healing hand.

I've spent the day by Chrissie's side, napping and reading stories to our princess who is doing well and remains fever-free. :-)

This message is sent to you via the blessing of Lorraine's cell phone. :-)
Quick note to let you know that Chrissie's fever is gone and she has only had one dosage of fever-reducing medicine (Tylenol), which was given in the middle of the whatever time it was that I announced her having fever.

No one thinks she has pneumonia at all (those were my middle of the night meanderings), but the pedi doctor does think Chrissie has some lung disease that she's probably always had, which is making it hard for her lungs to function properly.

They've gotten everything under control using Xoponex (similar to Albuterol to open airways) every four hours with suctioning of her airways as necessary. Oxygen sats vary, but mostly in the 80's now, which is fine. (Chrissie has lived with oxygen sats in the 70's her entire life.)

So, prayers for healing of Chrissie's lungs. I'm telling her to "boss" them. It will take time to teach obedience to such honery lungs! Chrissie's got her work cut out for her, but she's a fighter and such a good boss!

With God everything is possible. Gotta run...

This message is sent to you via the blessing of Lorraine's cell phone. :-)
Oxygen sats stabilized now...staying around 85%. Thank you sooooooooooooo much!!!!!

This message is sent to you via the blessing of Lorraine's cell phone. :-)
Whew, they moved Chrissie onto her back (flat) again instead of on her side, and they suctioned her out. Got some goop out, and now her oxygen sats are at 86! Praise the Lord!!! The song "Healing Hand of God" is playing on K-LOVE. I just love the way God works! I have seen the healing hand of God...

This message is sent to you via the blessing of Lorraine's cell phone. :-)
Need prayers for Chrissie's oxygen sats to go up. They're in high 60's, and they've been in 80's to 90's. They're going to suction out her breathing tube...sticking a little vacuum down into her lungs to see if they can get anything out.

My thoughts: wondering if Chrissie could have some pneumonia going on. She had that Metapneumovirus where she was hospitalized in February (severe virus that attacks respiratory system), and she also spent 10 days in hospital with pneumonia in Serbia when she was 3. Definately has battled lung stuff in her past.

This message is sent to you via the blessing of Lorraine's cell phone. :-)


Chrissie has a fever of 101.5 degrees F. 

Infection is something that can actually take her life.

Please pray that God would keep Chrissie shielded from infection from head to toe, inside and out.  Her chest was open for 8 days straight, then reopened for another day and has been operated on twice in her PICU room.  The risk of infection has always been extremely high.  The fever is a sign of infection.

Pray that God will fight off that infection and allow Chrissie's body to continue healing and working beautifully.

Her kidney labs weren't as good as they've been either, so pray that all of Chrissie's organs will work properly.

Trusting God for continued miracles and thanking you for your faithful prayers.

Thursday, April 29, 2010

Thankful Thursday

Wow, we have truly had a Thankful Thursday.

Thankful that Chrissie is hanging in there so beautifully.  Still a long way to go, but no sudden emergencies today for the first time in 11 days!  Thankful that Chrissie's sats, blood gasses, heart rate, blood pressure and all that they check on a constant basis have ALL stayed within an acceptable range!!!  Thankful that Chrissie's lungs haven't gotten any worse according to x-ray.  Thankful that her CO2 level was the lowest it's been in 2 days...48!!!  (34-45 is considered normal)  Thankful that they were able to successfully insert a feeding tube into Chrissie's intestines to stimulate the intestinal "villi" so that she doesn't have "gut" issues later.  (So far, so good with the liquid intestinal feedings.)  Thankful that our princess hasn't had anymore panic attacks today.  Thankful that I was able to "fix" our princess' hair today, and that her night shift nurse and day nurse both cleaned her up and got a lot of blood and yuckiness off of her body and back and neck.  (Still a ton of dried blood in Chrissie's hair, but I was able to get a lot of it out!)  Thankful that Chrissie was able to lay on  her side today to help alleviate bed sores and other issues that arise with lying on one's back for 11 days straight.  Thankful that our baby girl is here and fighting with all her heart to claim LIFE, His life.  Thankful that our God answers prayers and makes His presence so strong.  Thankful that He wraps His arms around us and holds us during the good times and the hard times.  So thankful for the precious life of our sweet angel.  Thanks be to God!

Thankful that 3 different deliveries of goodies and prayers were delivered to the hospital today: 
    Our gift basket.
    Some of the nursing staff LOVING the goodies that filled the entire table!
  1. A group of women from our church and our church's Mother's Day Out program (which we are not even a part of!) put together a huge thankful "spread" of all sorts of homemade baked goodies for the nursing staff at the hospital as well as a basket full of goodies for Matt and I.  The nursing staff came by to tell us to thank our friends for all of the amazing treats!  They were seriously grateful and giddy...seriously!  We are loving our basket of goodies.  Being loved on is such a blessing during this time.  Thanks be to God!
  2. A fellow adoptive mom who I've never met dropped by Rudy's BBQ for Matt and I early this afternoon!  She said she felt like God told her to bless us with a meal, and what a yummy treat and special surprise from a sweet mom who brought her 3 young children to a hospital filled with germs just to bless us.  Thanks be to God!
  3. Another adoptive mom, again who I've never met before, dropped by this evening to deliver a home-made chicken fajita salad with home-made brownies for Matt and I.  This woman said she was reading our blog right here in SA, and she heard God say, "Quit reading her blog you little stalker.  Get down there and do something to help this family...NOW."  :-)  Gotta love God!  This mom set up a Care Calendar for our family to have a meal brought to Matt and I every day at the hospital for a month!!!  She and her husband are also paying for an RV spot at a local campground for our family so that we can bring our other kiddos to SA often to hang out as a family.  She's also soliciting donations on our behalf to bless us with Seaworld passes so that we can take our kids to do fun things and have some "normalcy" amongst the separation and anxiety of Chrissie's hospitalization.  Thanks be to God!
Thankful that our children at home have had a great day and everyone seems to be getting well.  They've been battling Strep and Kiefer has had all sorts of "tropical" illnesses from Haiti (Giardia, fungus, ringworm, and also a sinus infection and fluid on his ears).  The report is that everyone is feeling much better today and Kiefer has been a very happy boy.  Thankful that we're going to get to see our kiddos tomorrow and spend some great times together this weekend.  Thanks be to God!

Thankful for the continuous prayers, encouragement, help and support of so many faithful prayer warriors around the world, lovin' on us from near and far.  We are blessed.  Thanks be to God!

Treasured Testaments

Chrissie is hanging in there.  I may not be able to update as often as I'd like simply because I don't want to leave her side.  She was given a muscle relaxer about 30 minutes ago, so she's resting nicely now with steady stats.  They're beginning to wean from a few meds to see how she does, and they inserted a small feeding tube down her nose into her small intestine to see if he body will tolerate 5cc's of liquid food an hour.

In the meantime, we pray and give all glory to God for His mighty hand, His presence, His love, His goodness, His presence, His grace, and His miracles that are alive and active today.

Over the last 11 days of Chrissie's heart journey, God has used Chrissie's life to change others lives around the world in mighty ways.  God has chosen our precious princess to speak His Voice, His Truth, His Hope to the ends of the earth.  I've held on to hope through your prayers and the many, many sweet comments and stories that you've taken the time to share.  Today, I had a few moments to gather just a few of these treasured testaments to post here for all of you to rejoice over.  There are hundreds of more comments like these, with literally people from around the world praying for Chrissie.  That is all God.  I had something like 23 people following our blog prior to Chrissie's surgery, and now there are literally thousands of people praying for Chrissie all around the world.  This has NOTHING to do with me.  It has EVERYTHING to do with our Heavenly Father drawing His beloved children closer to Him, and knocking on the doors of hearts around the world to let Him in so He can breathe His life into the hearts of those who He so desperately wants to know.  Christ wants His cross in the center of your heart, just as He has set His in our CHRISTyn Joy's heart. 

Praise God for the many treasured testaments He has shared with me over the past 11 days.  Rejoice with me as you read just a few of these here.  (Please know that if I didn't post your comment, it's not because it wasn't special or meaningful or touching; every single comment has brought me hope, joy, laughter and tears.  There's simply not enough time for me to express all that I would like and share all of the comments publically, but God is pleased that you are coming to Him and sharing humbly with me what He's doing in each of your lives.  To God be all the glory!!! 


"Praising God, Thanking God!! Amazing and beautiful. This has brought me so much closer to My God, my Daddy, my Savior,I went from being a "luke warm" christian to an ON FIRE christian! Chrissie's testimony will never let me cool again. I am blessed God led me to your blog and Chrissie's life, my life and my family's life will never be the same. Thank you Jesus!  Still praying for OUR Chrissie. Savannah(3) says Chrissie needs to get better so they can play togther when her Boo Boo's are better."  ~Lisa

"Your sweet little warrior princess has touched my life in a very deep and profound way over the last several days. Through praying for CHRISTyn Joy and all of you, and following her story I have felt closer to my Creator than I have in a long time. As a "tough guy" I've cried more in the last few days than most of my adult life (I'm crying now), some tears of sorrow but mostly tears of joy when I see Gods MIGHTY hand at work through your precious angel. I am so truly grateful to have the oppurtunity to pray for Chrissie and for the work that God is doing in my life (and so many others I know) through her. I know it's not ideal to have God minister to others through something like this, but He is and I trust that His plan is perfect. My life will never be the same!" ~tough guy

"During the last few months I have struggled with my relationship with God. I felt so distant- and no prayer I said seemed to help with this feeling of loneliness and despair. Through a friend I was informed of Chrissie's story- Since then I have been reading your blog and praying non-stop for God’s healing hand to touch Chrissie in ways no doctor can. I have also been praying for peace and serenity for you and your family. I feel closer to God than I have in years. In praying for Chrissie God has drawn me in and set my heart on fire with His never ending love and joy. My husband and I have only been married 18 months and have not yet been blessed with children, so I cannot possibly imagine what you are going through as parents. Your strength and testimony is so encouraging and motivational. God definitely knew what he was doing when he placed Chrissie in your hands! Your family will remain in our hearts and prayers"  ~Brandy

"I am so blessed that a friend posted a link to your blog on his facebook. I have been following it everyday. I anxiously wait for more posts! I feel like God is really teaching me how to pray without ceasing through Chrissie's ordeal. He is also helping me to remember how BIG of a God he is. There have been multiple moments in your story that I have thought - this is's over...and then God performs a miracle! AWESOME! I'v shared your blog with my co-workers and friends, and Chrissie has her own little praying/cheering section in South Carolina! Praying for you too Mom & Dad!"  -Debbie Russell

"What an AMAZING AWESOME GOD WE SERVE!! And what an AMAZING TESTIMONY SWEET CHRISSIE IS!! Dear Chrissie, YOU, a little 4 yr old girl that I have never met are strengthening this grown up's faith! I am fighting my own fight right now---which is NO WHERE NEAR as big as YOUR battle, sweet angel and I admit, I have almost been beaten down at times. But then I think of God and I think of YOU and I say "If Chrissie can fight to get better after ALL she's been through, if she can shed a tear but STILL believe and STILL fight" then I owe not only that sweet angel, but God and myself that SAME determined fighting spirit! It's NOT about me--I just wanted to tell you, sweet Chrissie, that I have never prayed more in my life as I have for YOU --and you, my little friend, you and your family you love soooo much are bringing ME closer to God. Thank you, dear one. You keep fighting ok?" Love, Lori

"I'm another that has never met Chrissie, but feel that she was brought into my life for a special reason. I grew up in the Episcopal church and have wandered away from organized religion over the years. But, after being guided to your blog, I have found myself ON MY KNEES, paying to God, begging Him to heal you, Sweet Chrissie. As I'm on my knees, I think of your beautiful smile... so big... and those cheeks...and I get chills. You have changed this world already, and you have no idea. Stay strong, beautiful girlie. You are a fighter and are here to do more AMAZING things... You have already changed my life in such a profound way. ***HUGS***" (4/26, 7:45AM)....."I've never done this before {fasting and praying}, but then again I have been doing a lot of things that I have never done before since "meeting" Chrissie -- I'm in!! I will be fasting for Chrissie's Miracle Monday today!!" (4/26, 11:48AM)  "Loraine: PLEASE forgive me for MY selfishness, but when there are long periods of time without an update, I get scared and worried to the point of it being all consuming. I pray like I never have before. Never. I have written before that Chrissie has brought me to place that I have never been, but am happy to be here. I just wish it was under different circumstances. Please tell that Serbian Sensation that there is an army out here bigger than she could EVER imagine, praying for her, thinking about her, and changing their lives because of HER! "  (4/29)...all from Maggie of North Carolina

"I am so inspired by you all. This story should be published some day as a means to help those of little faith. As I was thinking of Chrissy on the drive to work this morning (while listening to The Message on xm/sirius radio) I heard some of the lyrics in a song by Chris Thomlin "Jesus is healer, awesome in power, our God our God" it touched me. I pray for continued strength and healing."  ~Michelle

"I am new to your blog...Oh My WONDERFUL and MIGHTY God!!!!! I am at a loss for words. My heart was pounding as I read your day and Chrissie's fight and tears streamed my face for someone I've never met. My heart and prayers are with you now and will continue to be.  Do you know that your daughter's fight in that room probably brought someone to eternal salvation-I feel that in my heart that Chrissie's healing brought someone in that room Christ's healing. He works...24/7.  Hoping and praying to hear more news like this until Chrissie is home.  And the doctor in heart and prayers are with you. If all doctors were like you, this would be a different world. Thank you for having a servant's heart." ~Amber

"Oh I forgot to tell you this lol So many times yesterday when I was tweeting and asking on facebook for prayers I felt I was to ask people to stop what they were doing and get on their knees. I texted people we know here in England (we live in London) asking them to stop what they were doing and get on their knees to pray. William and I felt we were to get on our knees to pray and we did. There is something about removing yourself from all the distractions and submitting your entire body to God when you pray. So we did...I've felt this for a long time and I believe it even more today... when we are asking God for a healing in our own lives the most important prayers you pray towards YOUR healing are the ones you sacrifice your time to pray for SOMEONE ELSE'S healing. " ~Lu from London

"PRAISE GOD! THE ONE TRUE GOD! OUR GOD!! HALLELUJAH!  If there is someone out there watching this story unfold, or a staff member working with your family who doesn't know the Lord, then I say:  What are you waiting for?!"  ~Julie

"The witnesses to his miracles with Chrissie will be many. I can't begin to tell you what this has done for me. (One day, when you're not quite in such a life/death situation, I'll email you and explain what was going on in my life, and how this miracle has made a difference.)" ~Susan

"I woke up to a beautiful moon with a "raninbow" around it, and it reminded me of Chrissie. I told God that He was the One who hung that moon (impossible by human standards), and I asked Him to do the impossible for Chrissie too. Came downstairs to read this news...tears of thanksgiving are rolling down my face. We will just keep claiming all the Scriptures that we've been claiming. Our hope is in GOD ALONE! (((HUGS))) "  ~Family Rebuilding the Wall

"Glory to God! Your cardiologist is a treasure." ~Matushka Anna

"There are no words to describe Chrissie's story except miraculous, absolutely miraculous"  ~Deb Watson

"I have been following you guys for a couple of days now, and cried when I read what God did yesterday. I will keep praying that He continues to heal Chrissie in all ways necessary for a long, abundant life. Thank you for reminding me that my God IS mighty to save. "  ~Lisa C.

"Praise the Lord! God is truly performing a Miracle. And Chrissie is a witness to Him by her story. Even those of us that are strangers are crying and praying and thanking God for helping us on our spiritual journey through Chrissie. We will continue to pray and pray and pray."  ~ Amy B's mom in Illinois

"Thank you for sharing this journey with us. We have been praying since last week and I am amazed at not only your little girl but yours and Matt's ability to trust the Lord. I listened to you speaking last nite and your faith in the Lord comes thru so strong and with such "knowing" in your heart of His power to do His will. Chrissie is an amazing little girl whom the Lord loves deeply. I should not be so amazed as you have "seen" His mighty hand at work and that is deeply convicting. May we continue to see the Lord in all of this and our prayers are continuously going up for Chrissie."  ~mommajeane

"As I was praying for Chrissie in the car yesterday afternoon, the following song was playing....

When God's People pray by Crystal Lewis:

Deep in the dark of despair
Deep in my heart there's a prayer
That faith will reign over fear
That courage and strength will be mine

My heart is heavy I don't understand
Yet I know my life is in your hands

I realize that I am incapable
Of changing alone the impossible
But I believe in miracles
Together our voices will rise

We are not powerless in the face of fear
As one we will stand and make our voices clear

When God's people pray things will change
When God's people pray all the earth will obey
My faith can't be shaken because I have seen
The amazing, miraculous happens
When God's people pray

Our defense in danger
Our light in the midst of life
Our strength in the weakest moment
Our hope through the night, the night
All things are possible when we let go
Let go of what we can't control

When God's people pray things will change
When God's people pray all the earth will obey
My faith can't be shaken because I have seen
The amazing, miraculous happens
When God's people pray
The peace that we need will only come when we get on our knees

When God's people pray you know things will change
When God's people pray all the earth will obey
My faith can't be shaken because I have seen
The amazing, miraculous happens
When God's people pray

Lorraine....Just wanted to encourage you to continue rallying the prayer warriors on Chrissie's behalf. God hears us....He's listening...He's answering! Praise God!"  ~Karen

Chrissie is hanging in there.

Dr. Porisch's partner (another pedi cardiologist) visited this morning to let us know that she has a long, hard road to recovery ahead.  She's still a long way from being weaned off the oscillator/ventilator lung support, she's still on tons of meds that are telling her heart and body what to do, and there are still so many risks of infection.  Kind of a gloomy reality, but our God is so much bigger than those things.  They all seem so miniscule when compared to what mountains God has already moved.

This doesn't mean that it's going to be smooth sailing by any means.  It just means that God has shown His mighty healing hand in so many miraculous ways over the last 11 days as a direct answer to our prayers and pleads.  That tells me that if all of you prayer warriors remain on your knees for our princess, that He's going to carry us through this and overcome all of the obstacles that appear to be impossible to the human mind.  God and Chrissie are going to show ALL of the staff at this hospital just how mighty to save He really is, and He's drawing all of you closer to Him in the process.

One reader commented on how Chrissie is performing open-heart surgery on the world.  She is circumcising hearts around the world.  "The LORD your God will circumcise your hearts and the hearts of your descendants, so that you may love him with all your heart and with all your soul, and live."  Deuteronomy 30:6  I have prayed this prayer for my own heart for somewhere around 8 years now.  God has been circumcising my heart in a mighty way over the years, but nothing compares to what He's done through this journey with Chrissie.  I know He's using her to circumcise hearts around the world so that you may love Him all with your heart and with all your soul, and so that you can LIVE.  He will breathe His eternal life into your heart, just as He has revived and sustained Chrissie and given her LIFE.  All you have to do is ask.

Here are some things to pray for:
  • That Chrissie's heart and lungs will continue to improve and get stronger each day.
  • That her entire pulmonary system will perform perfectly with the heart carrying blood the way it should, the lungs accepting blood the way they should, the proper "treatment" of the blood (oxygenation and removing CO2), etc.
  • That Chrissie would be able to be successfully weaned from the oscillator to the ventilator and then eventually to no outside lung support.
  • That Chrissie would not have neurolical damage.  (Cardiologist today was concerned with some rolling movement of Chrissie's arm that was indicative of neurogical damage.)
  • For Chrissie's comfort during this painful and oh-so-hard to understand time.  Chrissie is metabolizing her sedation and pain meds so quickly that they can hardly keep up with her.  She's been having panic attacks when she gets enough movement to show us that she "feels like she's drowning" (the way people feel when they're intubated).  This has been the hardest thing for me to watch.  My daughter will appear to be sleeping soundly when lall of a sudden, she'll wake violently with a jolt while she opens her eyes quickly with a huge startle, as she tries to gasp for air, over and over and over.  Picture someone physically drowning and trying to come up for air, yet continuing to sink in the water.  Panic.  Horrible.  Can't stand it.  Nothing I can do but pray over her and speak love into her until the nurse can get extra drugs pushed into her line.  But she runs through the extra drugs so quickly that it's happening more and more frequently.  The doctors and nurses say this is normal and can't be avoided because she's on the enormous amounts of sedative and pain killers already, in a constant drip, plus she's being given extra dosages on top of it all!!!  This is killing me.
  • Prayer coverage for NO infection, anywhere. 
  • That Chrissie will slowly and successfully be able to wean from the heart support medications and other various meds that are telling her body what to do.
  • Would love for Chrissie to get this tube out of her throat so that she doesn't feel so panicked, but her lungs must clear and her entire pulmonary system must be in much better and stronger condition than it is now.  Godspeed on the total  healing of Chrissie's pulmonary system...heart, lungs, and everything in between!  (Pressures in the veins and vessels and arteries that run throughout her pulmonary system to be acceptable, too.)
Thank you all, prayer warriors!  I am so encouraged by your prayers and amazing stories of what Chrissie's doing in YOUR life.  She is a very special princess indeed who is the treasured daughter of our King of Kings.  God is good.

Wednesday, April 28, 2010

Wonderful Wednesday Witnessing {AKA: Boss Your Heart Day!}

Chrissie amazes me.  God knocks my socks off.  I am blessed beyond words.

Today was a tough, tough, tough day.

When Chrissie was bleeding so badly and rapidly earlier today, we knew that it was serious.  Dr. Kupferschmid was looking really stressed about getting Chrissie off the ECMO machine.  There was just no way to stop Chrissie's bleeding unless we got her off the ECMO because they couldn't give her any blood-clotting medicine while on the ECMO, in fact, they had to keep pumping her full of anti-coagulating medicine in order to keep her on the ECMO.

If Chrissie hadn't started bleeding today, she would still be on the ECMO now.  The right side of her heart still needed rest.  It was still too weak to perform on its own.  It was obvious when viewed via echo (sonogram) that there was no way this girl's heart could hold its own.  Not for a few more days, at the least.

So, when we were told about the "do or die" situation with getting her off the ECMO today, it was a bit of a panicky mode for Matt and I.  We knew that Chrissie's heart and lungs were still in very bad shape.  We knew that if they disconnected the ECMO and Chrissie's heart and lungs weren't strong enough to hold their own, then we would lose her and there would be NO getting her back after that.  The ECMO is the biggest, baddest life support system out there, particularly the rescue circuit that she was on!  There would be no other options out there if Chrissie's body failed her.

On top of all of this, I never mentioned to you that our beloved cardiologist, who was sent straight from God, left today to go to Iraq on a heart mission trip with Samaritan's Purse.  She's my earthly rock.  She gives me the low-down in layman's terms.  She cries with us, prays with us, laughs with us, and reminds us of Who is really in charge, The Great Physician.  Dr. Porisch had been recruited for this heart mission trip (which she volunteers to do quite often) before Chrissie had so many complications.  Dr. Porisch told us last night (in tears) that she REALLY didn't want to go to Iraq and leave Chrissie and us behind at this time.  God reminded her that He was calling her to head to the ancient town of Nineveh, the same place where He also called Jonah to so long ago.  But, Jonah disobeyed God and ran away because he didn't want to go there.  And we all know what happened to Jonah!  So, Dr. Porisch told God she would obey Him, and she would leave Chrissie in His hands as she obeyed and headed to ancient Nineveh, even though she REALLY didn't want to leave Chrissie at this time.

So, my cardio-rock was GONE today during this time or crisis.  UGH!  This forced me to rely solely upon God, knowing it was all in His hands from Day 1, and He ordered these steps with sovereignty.  Dr. Porisch stopped by to see Chrissie and tell us goodbye before she headed to the airport.  We hugged and reminded each other that it was going to be OK, it was all in God's hands, and He didn't need either of us in order to make His plan work!!!  She left the room in tears while I was forced to face the reality of getting Chrissie off the ECMO machine without Dr. Porisch around.  (As if I had anything to do with getting her off the machine, but still!!!)

The team came up with their do or die plan to get Chrissie off the machine, and the first attempt failed.  Chrissie's oxygen sats dropped down to 40, so they had to turn the ECMO back on.  At that time, I went to Chrissie's side (she had been asleep, totally out of it), and I prayed Ezekiel 16:6 over her.  "Then I passed by and saw you kicking about in your blood, and as you lay there in your blood, I said to you, "Live!", and the moment I said the word, "LIVE", Chrissie raised her eyebrows!!!  I knew at that moment that Chrissie was telling me she was going to fight her heart out to LIVE.  Dr. Kupferschmid said to keep doing whatever I was doing because her oxygen sats went up in the 90's when I spoke to her!  I prayed over her, spoke Scripture over her, and continuously reminded her of how much we love her and how much we needed her to fight.  She responded to EVERYTHING I said.  Chrissie used the movement of her eyebrows to speak volumes to me as I claimed life for her broken body.  Every time I told Chrissie that I loved her, she would raise her eyebrows, to tell me that she loved me back.  The medical staff in the room (about 8 people) kept telling me to stop asking her to respond to me because her carbon dioxide sats were too high for her to be able to respond, but I told Chrissie to show them what her God was made of, and CHRISSIE RAISED HER EYEBROWS!  Take that!  My God is bigger than any paralytic meds and carbon dioxide levels that prohibit movement.  Chrissie ministered to ME through her eyebrow talk!!!  I knew she was going to fight her way through this.

There was a LONG way to go to get Chrissie off the ECMO with little time to spare.  I started telling Chrissie to be the boss of her heart.  (Chrissie is always looking for opportunities to boss someone around!)  I told her to tell her heart exactly what it needed to do, and I explained it all in detail to her.  Then I told her repeatedly to "boss her heart", and guess what?!?  Right there on the screen of the echo machine (sonogram), Chrissie's heart started doing what it needed to do!!!  Chrissie was bossing her heart, and her heart was obeying!!!  The entire medical team witnessed it with their very eyes.  I heard one person say, "There's no way."  Another said, "Amazing."

So then the doctor shouts out for me to tell Chrissie to "boss" her lungs!!!  I cracked up, but they were witnessing our God at work before their very eyes with medical equipment to capture it in action!!!  So, I told Chrissie to boss her lungs, and I told her exactly what her lungs needed to do.  I told her that her lungs were dirty/icky, and they needed to get cleaned up.  I told Chrissie to send her lungs to the bathroom to wash up, and each time, they were coming back a little more clean, but not totally clean.  So, each time that occurred, I would tell Chrissie to tell those lungs to march right back to the bathroom to finish getting cleaned up.  They had to remove the icky carbon dioxide and open up and accept blood from her heart and oxygenate the blood.  There was so much bossing to be done, but Chrissie hung right in there and bossed and bossed and bossed.  She would tell me how hard she was working to boss her heart and lungs by physically shaking and moving her shoulders, arms, hands, and eyebrows.  (This was all while she shouldn't have been able to move at all due to drugs and high CO2 levels!) 

The doctors and entire medical team witnessed miracles before their very eyes.  Right here in Chrissie's PICU room as I told Chrissie to show the world what her God is capable of.  It was absolutely amazing.  Seriously.  Words cannot describe what we witnessed today.  We went from a heart that was broken and collapsed, to a full heart where every chamber was beating perfectly and filled with the right capacitites, beating properly, pumping properly and doing exactly what a healthy heart would do.

We also went from lungs that were filthy and not filtering or oxygenating or removing carbon dioxide from the blood to lungs that were giving oxygen sats in the 90's while CO2 levels consistently dropped!!!  Dr. Kupferschmid asked me to stay right where I was, doing exactly what I was doing while medical staff worked all around my daughter and me.  Everyone was crawling through wires and tubes and machines just so that I wouldn't have to leave Chrissie's side.  We only had "crawl" space available, but no one wanted me to move as God directed my steps and breathed LIFE into Chrissie.  His life.  Right before our very eyes.

Before we knew it, the ECMO had been turned off for 1.5 hours, as I "coached" Chrissie as God told me exactly what to say to her.  She continued to communicate with me through her eyebrows.  (She can't talk due to the intubation, and she had very little movement ability, but she forced her eyebrows to communicate with me!)  So, the decision was made to convert Chrissie's PICU into an operating room (for the second time today) and completely remove the ECMO machine!!!  I explained to Chrissie what they were going to do and what would be required of her, and how we needed her to continue to boss her heart and lungs so she could tell the world what her God is capable of, and Chrissie totally agreed with me by shaking her eyebrows up and down with absolute agreement and purposeful movement.  She even cried.  I cried, too, but I KNEW that God was going to save her and pull her through this.  He was doing it miraculously before our very eyes.

We were kicked out of the PICU as the cardiovascular operating team moved in to do their stuff.  (They all know us now and we know them...not something I wish upon anyone!)  I told them that if Chrissie started to die, to come get me so I could tell her what to do so they could see our God at work.  They assured me that they would.

Matt and I, along with my mom, sat in the waiting room and prayed.  A man from our church, Mr. Bill Taylor (who has faithfully come by to pray with us), led us in prayer before he headed out to donate blood.  It was all in God's hands. 

About 2 hours later, Dr. Kupferschmid bee-bopped with a glow into the waiting room and told us to come back into the room.  She did GREAT!  He was able to get the cannulas out and repair both the jugular vein and carotid artery.  (He had planned to not repair them and just tie them off because he didn't think he'd have time to get them repaired before she bled out.)  He opened the lower portion of her chest and sternum and drained off a lot of extra blood.  Everything remained stable during this time, and Chrissie was successfully removed from the ECMO machine!!!  This was impossible just a few hours prior.  It was so obviously God.  Dr. Kupferschmid rubbed Chrissie's head and said, "Amazing...just amazing."  He shook his head in disbelief, but a smile and joy radiated from his face.  Our miracle girl was alive!

At that moment, Dr. Porisch texted me to say these words:
"I am in Denver now.  It was the longest plane ride ever being unable to check phone, text or blog.  I have been in constant wrestling match with the Great Physician since takeoff from SA.  It is killing me to not be tehre with Chrissie and both of you!  But God is in control and He is mighty to heal and save.  You have been such an amazing witness to me and thousands of others.  I am praying that God will strengthen you and uphold you on this unbelievable roller coaster.  ~Mary"

I texted Dr. Porisch back to tell her to call me if she could!  Moments later the phone rang, and I gave Dr. Porisch the praise report!  Dr. Porisch was elated, and she shared with me that she spent the ENTIRE plane ride praying for Chrissie.  She told me that the last blog update she got was that the bridging off the ECMO failed when Chrissie's O2 sats dropped in the 40's.  At that time, she was forced to power off her phone.  So, she cried and prayed and yelled at God the entire plane ride.  She looked up every Scripture that had to deal with healing and giving life, and she prayed and claimed those for Chrissie.  She said that the lady next to her surely thought she was crazy, but she couldn't control herself.  Dr. Porisch said she finally gave up the wrestling match with God and cried out with desperation to The Great Physician as she drifted through the heavens, as close to God as she could be, claiming LIFE for Chrissie!

Well, would you believe that Dr. Porisch's prayer time occurred during the exact same time that Chrissie started to "boss" her heart and lungs and things started turning around so miraculously with Chrissie's sats and functions that the ECMO was able to stay off for an entire hour and a half?!?  This is NO coincidence that on the very day at the very hour that Dr. Porisch is flying through the heavens with no internet or phone service, while she fervently prays for her patient to live, that God was moving mountains in PICU room 1 at Methodist Children's in San Antonio, Texas!!!  Dr. Porisch obeyed her God's command to leave her patient and go to ancient Nineveh, and in her obedience, she trusted God and petitioned Him to grant Chrissie life. 

And God answered her prayers and honored her obedience.  A little different ending than Jonah's.

We are amazed.

Truly in awe.

Utterly grateful.

Forever blessed.

Dr. Porisch, you will never know how much you mean to me, precious servant of God.  You took the risk of contacting me back in the summer of 2009 to let me know that you were willing to help save Chrissie's life if we were to obey God and bring her home from Serbia. When all other cardiologists stated that Chrissie's condition was "not compatible with life", you chose LIFE.  His life.  His way.  You obeyed God's command to leave and go to ancient Nineveh, even when you didn't want to.  Even when you begged God to let you stay.  You sought His will and obeyed, even when it wasn't what you wanted.  You prayed and prayed and prayed and cried and cried and cried and begged and begged and begged and pleaded and pleaded and pleaded on behalf of our precious angel, Chrissie.  And guess what our faithful God did?  He healed and healed and healed.  He has used your obedience to breathe new life into our Serbian Sensation.  We cannot ever express our gratitude for you.  Ever.  We love you and I already miss you immensely.

I will need to thank Dr. Kupferschmid and all of the medical team members and ECMO specialists for saving my daughter's life, multiple times, literally.  I will have to save that for another post.

I have to thank YOU, my faithful prayer warriors, for continously lifting Chrissie and our family up.  Please don't stop now as the road is still not clear.  As you've witnessed on this Wonderful Witness Wednesday, God hears our cries and He answers our prayers.

"The LORD God formed the man from the dust of the ground and breathed into his nostrils the breath of life, and the man became a living being."  Genesis 2:7

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Whew, Wild Wacky Wonderful Wednesday

Quick report to tell you all that Chrissie is hanging in there.  Haven't left her side, so that's why there's not been any updates from me.  If anything ever goes wrong, I will always notify you via the blog.

For now, just keep praying that everything will work beautifully as God intended.  God is hearing and answering your prayers.  The CO2 level has now dropped to 50, and anywhere between 35-45 is normal.  Praise God!  Her oxygen sats are at 93.  She is still on an oscillator (a specialized ventilator) that is blowing air and oxygen into her lungs, but her heart is working totally on its own. 

This is truly nothing short of miraculous.  Even Dr. Kupferschmid said, "AMAZING!", as he affectionately rubbed Chrissie's head with his hand.

Have lots of wonderful stories to tell with an amazing testimony of Dr. Porisch's. 

God is really showing Himself as Jehovah Rapha in such a mighty way.

My help comes from the Lord.  Thank you so much for everything.  I feel like every one of you is a family member, and if you've accepted Jesus' gift that I've begged each of you to receive, then you ARE family and we WILL meet one day in Heaven where you'll stand in the long line of prayer warriors to dance with Princess CHRISTyn Joy!  For now, we plan to take her home and dance for a long, long time.

Keep praying that Chrissie blood pressure, oxygen sats, carbon dioxide sats, heart rate will remain stable, and that her heart and lungs will work perfectly as God intended.  We can't let up on those prayers.  (Chrissie has been in this same position before...Monday, April 19 until early morning Thursday, April 22 when Chrissie's heart stopped.  There's still so much that can go wrong with so many complications possible, but with God, all things are possible.

Keep praying beautiful army!!!

Looking forward to Thankful Thursday!!!
She's alive thus far!!! Just finished. Definitely need prayers for all to work. CO2 is still higher than should be. (It's double where it should be.) keep praying.

This message is sent to you via the blessing of Lorraine's cell phone. :-)
The report is that they've got one of the cannulas out and are working on the second one now. (I went on a hunt to find someone who could tell me something!) I don't know anything else because we're in the waiting room so we just keep praying and petitioning for the Lord's favor to be upon Chrissie in every way from her head to her toes and every nook and cranny in between, including her blood and gasses in the blood. God is able. He heals the broken-hearted and binds up their wounds.

This message is sent to you via the blessing of Lorraine's cell phone. :-)
OK, here's the big moment:  permanent removal of ECMO machine is happening now!  We've been kicked out of her room because they've converted it into an operating room again for the second time today.    Chrissie's now being operated on to remove the ECMO cannulas that are inserted at her neck that run  down into her heart.  They're going to open the bottom portion of Chrissie's sternum to suck out extra blood that's in there.  Then they'll close everything up, and it's up to God and our warrior princess to show the world what this tag team can do!!!  God is MIGHTY to save.  He is mighty to save!!!
We need Chrissie's CO2 levels in the blood to decrease.  Pray.
They're going to do an echo and try to bridge (turn off ECMO) while watching her heart under ECMO to see what the problem is.  They're thinking that the blood isn't flowing in the right direction in her heart.  Just spoke to Chrissie, and she raised her eyebrows at me again when we claimed Ezekiel 16:6-7a over her.  Chrissie is fighting, and she's looking forward to her LIFE party!!!!!!!!!!!!!

Chrissie's feet are swelling.

She's still in there, still raising eyebrows in response to things I tell her in her ear, still crying her crocodile tears.  (This photo was actually the other day, but she gave me the same tear just moments ago.)

Bridging again now.
Bridging wasn't successful.  Oxygen sats went down to 40, had to turn ECMO back on.  Dr. Kupferschmid is trying to discuss options with doctors.  Please pray for wisdom for him to know what to do and how to do it.  Pray for God to heal completely, for Him to be Chrissie's CPR, breathing life into Chrissie's lungs, clearing them of all fluid and collapsed areas.  Lord, make Chrissie's heart, lungs, and entire pulmonary system perfect.  We beg you.


3:30 is the magic half-hour time slot when Chrissie's external life support MUST come off and the One and Only True Giver of all Life must give her all of the support she needs.  God, breathe LIFE, into Chrissie. Be her total life support.  You are ALL she needs, Jehovah Rapha, giver of life.

They're currently "bridging" where they turn off the machine and watch, then turn it on if necessary.

Some of you have asked to see photos of Chrissie currently so you can pray over her precious body.

Warning:  These are not for the weak.

Trying to get off ECMO now.  Bleeding too much.  Pray.

You're Going to LOVE This!

A reader just emailed me and said to pray Ezekiel 16:6 over Chrissie.  The "funny" thing is that God gave me that verse through my good friend, Ellen, and I had a chance to print it out on pretty paper and hang it on Chrissie's bed.  Ezekiel 16:6-7a, "“Then I passed by and saw you kicking about in your blood, and as you lay there in your blood I said to you, ‘Live!’ I made you grow like a plant of the field. You grew up and developed and became the most beautiful of jewels.”

I claimed that verse for Chrissie last Friday 4/23, after I saw Chrissie laying in her own blood after being given chest compressions for an hour in front of me last Thursday.
Today a reader emailed me to pray this over Chrissie continuously.  I hopped up and layed hands on Chrissie and prayed that verse over her.  You'll never believe what Chrissie did.  (Now remember, this is a girl who's asleep and still partially paralyzed under anesthesia after having her chest opened a few hours ago.)
When I spoke the word, "LIVE" from Ezekial 16:6, Chrissie raised her eyebrows in a HUGE direct response to those words!!!  Every time I read the verse, when I speak the words, "LIVE", Chrissie raises her eyebrows.
God is GOOD!  He is real.  He loves Chrissie.  He is speaking to the world through this precious angel.
Dr. Kupferschmid is at Chrissie's bedside, working earnestly to try to help suction blood as she's rapidly losing blood.  The ECMO specialist is pushing blood in her trying to stay ahead of Chrissie's blood loss.  Dr. Kupferschmid just said that he's gotta get her off this ECMO now.  (Staying on the ECMO requires the blood to be thin and not clot, but with Chrissie's continuous bleeding, he really needs to get her blood to clot, which can't be done while she's on the ECMO, yet the ECMO is what's keeping her alive.)

Jehovah Rapha, we need your miraculous healing Hand in this PICU room now.  Touch Chrissie's heart and lungs and entire pulmonary system to gloriously make everything work beautfilly and perfectly in a mighty way, the perfect way you intended when you so perfectly knit our bodies together and created the amazing and miraculous body.
Chrissie's chest is closed up now.

Dr. Kupferschmid reported that there was A LOT of bleeding within her entire chest cavity, which is most likely a result of the TPA drug that breaks up clots.  (The drug that works like Liquid Plumber that I said has significant risk, especially if it seeped past the original clot and into the chest cavity, which it appears to have done.)  The benefits of using TPA during Chrissie's episode of SVCS (when she was "inflating" like a balloon and turning purple because the blue blood was building up in her upper torso and head...NOT good) yesterday definitely outweighed the risks.  It was a life or death situation, and the best (least invasive) first response to clear the clot causing the SVCS was to give TPA a try.  God and the use of the TPA ended up doing the miraculous and saving Chrissie's life.

However, as I said, TPA had significant risk, and at 4AM today, we saw the risks coming to fruition. 

They turned Chrissie's PICU room into an OR and opened her up to discover tons of bleeding, so it was clearly the right choice to open her back up.  They washed out the chest cavity and got out as much of the pooling blood as possible, then they put glue everywhere they could to try to stop the bleeding/oozing, but with TPA, it's hard to get it to stop because the blood isn't able to clot at all on it, plus Chrissie is being given other less potent drugs to keep her blood from clotting so that she can be on the ECMO machine, which is necessary to keep her alive.

Dr. K is noticing a few other signs of things going south as a result of being on ECMO for so long.  (It's OK to be on ECMO for longer if it's just supporting the lungs, but with it supporting the heart and lungs on this rescue unit, there are other issues that can occur within the body.)  Chrissie has some areas on her left foot that are signs of "emboli" (sp?) where clots go to the extremities, and while I haven't researched any of this, it told Dr. K that Chrissie really needs to get off of the ECMO machine as soon as possible.

His desire today is to be as aggressive as possible in weaning Chrissie from the ECMO machine and seeing if her heart is strong enough to sustain her on its own.  This is HUGE, but Dr. K feels like we need to move quickly and aggressively to get Chrissie off the machine.  It's being referred to as a "mega wean" from the ECMO.  We don't know the time frame as it's dependent upon how Chrissie's heart and lungs do as they continue to turn the machine down.

So, the prayer requests for today are (in addition to anything else God lays on your heart for our family):
  • That Chrissie would stop bleeding internally, but  not clot so much that it clogs the ECMO or drainage tubes...a delicate balance to achieve.
  • That Chrissie's heart would be strong and "perfect".  That it would beat and pump properly, that blood would flow through it properly, that it would do the proper exchange of blood from left to right without improper exchange of red/blue blood, that it would push the correct blood out of the new pulmonary artery and out through the new valves and into the lungs.  Basically that Chrissie's broken heart would be completely, wholly, and miraculously healed, every nook and cranny, every chamber, every function, inside and out.
  • That Chrissie's entire pulmonary system would be completely restored to perfection.  That all of her arteries, veins, and vessels would be able to handle the new pressures of blood running through them, and that they'd be able to get the blood delivered to the lungs properly.
  • That Chrissie's lungs would accept the blood being delivered by Chrissie's heart and pulmonary system.  That her lungs would clear and inflate.  (Right now she still has areas that are collapsed within her lungs, and one of those collapsed areas is at the top of one of her lungs, where blood needs to enter the lung, making it really difficult for blood to enter a collapsed cavity.) 
  • Lungs are a huge prayer request because if her heart is able to function properly on its own, the lungs HAVE to clear up and function properly as well.  Lungs are not clear right now.
  • That Chrissie's entire pulmonary system would function beautifully, miraculously, and perfectly.  That Chrissie's blood would  be properly treated by her own pulmonary system.  That the carbon dioxide gasses would be removed as they should and that her blood would be properly oxygenated by her own pulmonary system, as God intended it, all at the proper life-sustaining and vital levels.
  • That Chrissie would be able to get off the ECMO machine and LIVE!!!
My dearest Chrissie, we are so madly in love with you, our precious warrior princess.  I've never met a girl as strong and brave as you, my sweet love.  I weep as I look at your helpless body that is swollen and hurting with tubes coming out in all kinds of areas, looking at tubes sewn into your skin, protruding from your tender neck, and I wish that I were the one on the hospital bed in this room.  But God quickly reminds me that if it were me, I wouldn't still be alive because I am not as strong as you are, baby girl.  You are a much braver, stronger, and tough girl than your mommy is, and I cannot even begin to tell you  how proud of you I am.  I know I would have given up a long time ago.  I know how badly you want to come back to your mommy and daddy who you love so much.  I know how much you want to boa constrict our necks and proclaim to the world that we are YOUR mommy and daddy, no one else's.  I know how much you want to put your head under the bathtub water with your big brother Sawyer with those cute pink goggles on your precious face while your chubby sweet cheeks protrude as you look at us with glee, splashing in the tub.  I know how much you want to blow out 5 candles on your birthday cake this year on October 8.  I know how you could tell the world the day of your birthday as you so looked forward to that day, and we so looked forward to seeing you fill your lungs with enough air to blow out the 5 candles on your cake.  We are so proud of you for being able to blow out 1 of the candles at your princess party the night before your open-heart surgery, but we do not give up hope that you WILL blow out 5 candles in October, and we'll throw you a HUGE welcome home party with as many candles as your heart desires as soon as you come home, baby girl!  I know how much you want to play chase with Kiefer without getting winded, how you want to jump on the trampoline with Parkey without having to be held, how much you want to race on your scooter with Sawyer without him having to push you, how much you want to take a walk with Meribeth instead of having to be pushed in the stroller, how much you want to sing and dance with Mattie without her having to hold you on her hip and sing and dance for you.  I know how much you want to play Hide and Seek with Emily and Stephanie Hall, the kind where you can actually run when they discover you and squeal with delight without us having to tell you to rest.  Baby girl, you're stronger than you know.  You're the strongest girl I've ever met.  You have more courage than the entire world put together.  I wish that you didn't have to endure all that you're going through, my precious angel, and I wish that there was something I could do to alleviate your pain and frustration.  If there's one thing I am sure of, my love, it's that God is with you and Jesus is holding your hand through this trial, and our Father's love for you is greater than mine.  I don't see how that's possible, but I know it without a doubt.  None of this makes sense to our measly minds, but God is sovereign, baby girl, and He has a mighty plan in all of this.  Sweetheart, your life has brought more people to their knees than we can count.  You are a source of light to our hurting world.  You are being used to bring hope, help and healing to thousands of people around the world.  Most people are not chosen the way God chose you, baby girl.  He chose YOU baby girl, ;you are His princess, the daughter of the King of Kings, the cherished one who He choses to show the world His miracles through, and that is a great honor and privilege, although it's not necessarily a fun one.  Oh what I would do to be able to take this from you, but the blessing of being chosen is one that I would never want to steal.  I wish your gift of being chosen would be a lot less painful and a lot les dramatic, but I hope to hear one day soon from your lips that you had no pain while Jesus' angels played and frolicked with you as you had tea parties and birthday parties and galloped on horses through the fields, having the biggest and most fun party you've ever experienced as the world stayed on their knees, lifting you up to our Father.  I pray that you will have no negative memories of all that you've been through physically in this hospital room because you have been the most cherished princess present at God's continuous party in honor of His chosen and beloved CHRISTyn Joy.  I know without a doubt that God has you in the palm of His hand, as He strokes your fine light brown hair and has pedicure, manicure and jewelry parties with you while the rest of us pray for you and continue to beg God to restore you to perfect health and to give us the awesome privilege of being your earthly parents who love you more than we can ever express, our precious angel.  We want you to come back to Forgotten Saw Ranch with us so that we can remind you of how much we cherish your precious life, and so you can be a reminder to others to take time to play TODAY.  Sweet angel, we love you dearly and we ask you to keep battling, our warrior princess.  We love you and miss you more than you know.  We can't wait to hug your neck and feel your tiny fingers press into our necks with a grip like none other.  I'm not ready to say goodbye to you, which is why this letter is rambling in circles, so I'll close with the words you always needed us to say:  Mommy and Daddy never leave you, precious angel.  We love you forever and always no matter what, sweet love.  We are so proud of you.  Mommy loves you.  Daddy loves you.  And now the whole world loves you, too, princess.  You are His princess, the daughter of the King of Kings, sweet love, and don't you ever forget that.  You are chosen.

Here's a song for you and the rest of the world who is praying for you, sweet love, one that seems to be so true of our reality right now, one that is a reminder to all of us of what's true right now:
Three in the morning,
And I'm still awake,
So I picked up a pen and a page,
And I started writing,
Just what I'd say,
If we were face to face,
I'd tell you just what you mean to me,
I'd tell you these simple truths,

(Chrissie:)  Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
(World:) Take your time and pray,
These are the words I would say,

Last time we spoke,
You said you were hurting,
And I felt your pain in my heart,
I want to tell you,
That I keep on praying,
Love will find you where you are,
I know cause I've already been there,
So please hear these simple truths,

(Chrissie:)  Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
(World:) Take your time and pray,
These are the words I would say,

From one simple life to another,
I will say,
Come find peace in the Father,

(Chrissie:)  Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
(World:)  Take your time and pray,
Thank God for each day,
His love will find a way,
These are the words I would say

~These are the Words I Would Say by The Sidewalk Prophets

Princess Chrissie after her Make-A-Wish send-off party in February, 2010.

Opening her up again...

Chrissie started losing a lot of blood at 4am, so they're going to convert the PICU room into an OR at 9:30am and open Chrissie's chest and take a look inside to see if they can discover the source of the bleeding. We want them to be able to discover the source so that they can address it and try to stop it. They will open her stitches and her sternum. It's not another open-heart surgery per se, but we need the same prayer coverage that you faithful warriors are so good at doing. Pray that Dr. K will find the exact source of bleeding and that he'll be able to stop it. Pray against infection, as always, since they're opening her back up.

I wanted this to be Wonderful Wednesday, but this is starting out as Wild Wednesday pretty early!!!

This message is sent to you via the blessing of Lorraine's cell phone. :-)
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...

Tuesday, April 27, 2010

Amusement Parks

For those of you who know us, you know that Matt (my hubby) LOATHES amusement parks.  He hates the lines, the waiting, the heat (Texas), but most of all, he hates the gut in your throat "thrills" of roller coasters. 

Well, the past 9 days have been our own version of Fiesta Texas amusement park, Chrissie style! :-)  It just so happens that Chrissie LOVES amusement parks and drama, but my guess is that Chrissie would say, "I no love this musement park.  I love Disney World musement park."  Chrissie, honey, I agree wholeheartedly!!! 

Dr. Kupferschmid just examined Chrissie and all of her outputs and stat reports for the day, and he wants to just watch things for now.  He's hopeful that the internal bleeding point will slow/stop so that he doesn't have to open up her chest again.  Whew, I think I can breathe again!!!

The head pediatric ICU doctor as well as the on-call pedi cardiologist said several times that it was "just miraculous" what happened.  They are all in a semi-stunned state.  In fact, the pedi ICU doc said to Dr. Kupferschmid, "I'm really just stunned right now.  This was just stunning."  They were all shaking their heads with a stunned disbelief of all that happened in a mattter of about 3 hours with a miraculous ending!  When DR. K arrived, Chrissie looked GREAT.  She made the nurses and doctors look like liars when Dr. K arrived!!!  The entire cardiac surgery team was on stand-by, literally standing by Chrissie's bedside in scrubs and masks, awaiting Dr. K's arrival so they could whisk Chrissie into the OR (they had even taken the bed apart incase surgery had to be done in the PICU room), then God did his thing, calmed everything down and saved the day!!!  I heard the on-call cardiologist explain to Dr. Kupferschmid that Chrissie had classic VCS (vena cava syndrome).  She was purple. The right atrium was collapsed, totally compressed, getting worse by the second, then all of a sudden there's this miraculous change.  Stunning.  Totally stunning when the echo shows this perfect right atrium after nothing we did could fix it.  The doctor's last words were, "I was just stunned.  Miraculous."

That's our God and your prayers being answered as your throw yourself at the foot of His throne on behalf of our warrior princess!!!  Oh how He loves His children, and oh, how He loves to hear your voice petitioning for one of the "least of these". 

We're ready to go home from the amusement park.  Or atleast hang out at one of the feel-good shows.  No more rides please.  We're nauseated.

PS  I will try to put together a post to explain what happened today, but I'm too exhausted right now.  You can always call in to Brent's radio show tonight at 10PM CST if you have questions.  347-677-1517
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