Saturday, May 29, 2010

Celebration of Life Video

Here is the video from Chrissie's Celebration of Life on Sunday, May 23, 2010. It's been divided into 14 parts. (For those of you who get email or RSS updates, you will need to click on the post to see the videos.) Thank you for being patient!

Processional & "Jesus Loves the Little Children"

Proclamation & Prayer

"Jesus Loves Me"

Siblings' Tribute

Lorraine's Tribute (Part 1)

Lorraine's Tribute (Part 2)

Lorraine's Tribute (Part 3)

Lorraine's Tribute (Part 4)

Matt's Tribute

"With Hope"

Dr. Mary Porisch's Tribute

Dance & Testimony Slideshow

Royal Proclamation

Prayer & "Happy Birthday"


Many thanks to Melody Valadez and "V Productions" of Driftwood, Texas, for their generous gift of videography and preserving the precious memory of our princess.  We are most grateful.

Wednesday, May 26, 2010

Video of Chrissie on TV

Here is the footage that aired about Chrissie on KENS 5 in San Antonio tonight.  It shows video footage of Chrissie's contagious laugh.  This is really hard for us to watch, but I pray it will bring even more awareness to orphans.  If you'd like to donate in Chrissie's memory to help save an orphan, please go to http://www.reecesrainbow.com/ or you may support "Abby's Wish" at http://www.riggsfamilyblog.com/


*Would like to clarify that Chrissie did not have a pulmonary artery or pulmonary valves, which meant she had no blood flow from her heart to her lungs.  She had one large hole between the lower two chambers of her heart and many multi-collateral arteries.  Chrissie's condition is considered the most severe of heart conditions; the hardest to repair, but when infants are born in the US with this condition, they receive heart surgery to repair the condition and have a much higher percentage of surviving and thriving.  Chrissie didn't have access to the same health care that we as Americans have since she was born in Serbia, but God kept Chrissie alive until she could be united with her forever family.  We adopted Chrissie in Serbia in October, 2009, where we celebrated Chrissie's 4th b-day with her.  Chrissie lived to be 4 years, 7 months, and 11 days old.  Chrissie spent 6 months with our family living on our ranch in Wimberley and 1 month living in the PICU of Methodist Children's Hospital in San Antoino.  By the grace of God, Chrissie lived the best 6 months of her life with our family on our ranch, and she gave us the best 6 months of our lives as well.  (The 7th month was spent at the hospital where she had open-heart surgery and remained intubated and unable to speak for 31 days until God called her Home.)  Every moment we spent with Chrissie will be forever cherished.  She is a precious jewel we will always treasure.

You can also click HERE to view it and see a few photos online at the KENS TV5 website.

If you are new to our blog, I encourage you to read more of Chrissie's story by scrolling down to the "Blog Archives" in the right sidebar.  The archives are arranged chronologically, sorted by month; Chrissie's open-heart surgery struggles began April 19, 2010.

SA TV Story on Chrissie

Just a quick update to let you know that any of you in the San Antonio area can see Chrissie's story on KENS TV5 tonight at 10PM and again tomorrow morning.  It's supposed to also be online at http://www.kens5.com/.  A news reporter with KENS TV5 read Chrissie's obituary in the San Marcos Daily Record, and she called to see if she could come interview our family so she could tell Chrissie's story and help raise awareness for orphans.  (I won't get to watch the news blurb b/c we don't have TV and we wouldn't get SA news anyway, but I'll see what they post online.)

I haven't turned my computer on in a few days, so if you've emailed or commented or contacted me via the web, I apologize that I haven't gotten back to you.  I will...eventually.

Parker turned 14 yesterday (May 25) and Kiefer turned 2 on May 20.  Between b-days and Chrissie's celebration of life service and learning to live without our princess, I haven't had a chance to even open my laptop.

Friday, May 21, 2010

Chrissie's Obituary

Christyn Joy Patterson, our warrior princess and precious angel, began her eternal dance with Jesus during the early morning hours on Wednesday, May 19, 2010. Our beloved daughter was known around the world as Chrissie, the Serbian Sensation, who touched more lives in 4 short years than most of us ever will in our lifetimes.


Chrissie was born in Serbia October 8, 2005 under the name Barbara Duga, and she was adopted into her forever family as Chrissie Patterson on October 14, 2009. Shortly after Chrissie was born in Serbia, her birth family abandoned her at a Belgrade Hospital when they discovered she had several severe congenital heart defects that could not be repaired in Serbia. Chrissie spent the first ten months of her life in a hospital in Belgrade, Serbia, fighting for her life, as she was determined to one day meet her forever mommy and daddy. Chrissie was discharged from the Belgrade Hospital as an 11-month-old orphan and sent to live in an orphanage called Kolevka (which means The Cradle) in Subotica, Serbia, where Chrissie spent the next three years of her life waiting for her forever family to rescue her. In June, 2009, God announced His calling upon The Patterson Family of Wimberley, Texas, to go rescue His beloved miracle child, Chrissie. Chrissie was united with her forever family in October, 2009, when her family adopted her in Serbia and brought her to Texas where she joyfully lived for the next six months of her life, surrounded by her forever family who cherished her with all of their hearts.

Chrissie was an absolute joy to all who ever met her. She always had a smile on her face and simply loved life. Chrissie taught the world what it means to truly live! Chrissie underwent massive open-heart surgery at Methodist Children’s Hospital in San Antonio, Texas, April 19, 2010. Her talented, courageous, and committed cardiac and medical team, led by Dr. Mary Porisch and Dr. Kupferschmid, never gave up on Chrissie. Chrissie spent 31 days in the PICU of MCH, where she fought boldly and courageously for her life. God worked many mighty miracles in one month during Chrissie’s stay at the hospital, and her strong will and amazing attitude will always be remembered.

Chrissie is survived by her forever family who loved and cherished her with all their hearts: Daddy/TaTa Matt Patterson and Mommy Lorraine Patterson, Big Brothers Parker and Sawyer Patterson, Little Brother Kiefer Patterson, Big Sisters Meribeth and Mattie Patterson, as well as two more special big sisters Emily and Samantha Hall and their mom, Stephanie Hall. Grandparents: Nana Betty Immel and PawPaw Larry Immel, Grammie Kathie Patterson and Grandaddy Larry Patterson, and a very special Aunt “Shoosha”, Trisha Immel Huddleston. Chrissie is also survived by many other aunts and uncles, cousins, and friends around the world.

A royal celebration of Princess Chrissie’s life will be held Sunday, May 23, 2010 at 2:30PM at Hays Hills Baptist Church in Buda, Texas. The funeral will be available for viewing live online via the family blog at http://www.allarepreciousinhissight.blogspot.com/ . The family will receive guests during visitation at Hays Hills Baptist Church in Buda May 22, 2010, from 3-5PM. Chrissie’s family will host a private graveside burial Monday, May 24, 2010. In lieu of flowers, memorial contributions may be made to orphan advocacy at www.ReecesRainbow.com or “Abby’s Wish” at www.RiggsFamilyBlog.com.

“I will not leave you as orphans, I will come to you.” John 14:18

Arrangements under the care and guidance of Pennington Funeral Home, 323 N. Comanche, San Marcos, TX 78666, 512-353-4311. Obituary and guestbook online @ http://www.penningtonfuneralhome.com/.

-------end of obituary

I was limited to 600 words for Chrissie's obituary, which was so hard for me.  (I had to edit and cut and cut and cut to get it down to 599 words!)  There is so  much more I'd like to say about this amazing, beautiful brown-eyed girl who changed our lives forever. 

Most of the small town papers had a deadline of last Tuesday for the obituary, which was impossible to meet since Chrissie went to be with Jesus on Wednesday.  Please spread the word about Chrissie's celebration of life since the obituary will not be in the papers until next week.

Many of you have asked for our mailing address:
100 Windmill Cove
Wimberley, TX 78676

Thank you for your continued prayers.  Many of you have asked about our children.  This is a very hard time.  I ask you to continue to lift everyone up as we mourn the loss of our beloved Chrissie.  Would  you please say extra prayers for Emily Hall?  She is the tall pretty blonde girl who was in so many of our photos, and she is having an extremely difficult time, more so than anyone else.  Emily is like a daughter to us, and Chrissie viewed Emily as her sister.  They played together for atleast an hour a day, every day.  Emily is devastated and really needs your prayers.

Thank you!

Thursday, May 20, 2010

Quick Funeral Announcement

Chrissie's celebration of life will be held this Sunday, May 23 at 2:30pm at Hays Hills Baptist Church in Buda, Texas.

Viewing will be Saturday, May 22 from 3-5pm at Hays Hills Baptist Church.

We will have a live video stream of the funeral online so that everyone around the world who has prayed for Chrissie will be able to join in the celebration of her life. I will post the link when I know more.

We will be making this a royal celebration of our precious princess, so you are welcome to wear formal attire, but it is by no means a necessity to do so. We want this to be a cheerful celebration, so please wear any color you would like. No need for somber black mourning attire. This will be a royal party for our princess!

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

Funeral Arrangements

Matt and I will be meeting with the funeral home director at 10AM today.  There are so many decisions to be made, but I am trying to get a rough head count regarding how many people will be attending Chrissie's funeral.  I am not sure what day we'll have it yet (thinking maybe this Sunday, May 23, but not sure yet), but I'm wondering if our church will be large enough to host the funeral.

Would you please do me a favor to help me plan?  If you ARE going to attend Chrissie's funeral, please leave me a comment after this post.  Please do NOT leave a comment unless you are planning to attend so that I can just easily look at those comments and tabulate numbers for attendance purposes.  Feel free to tell me how many people will be attending from your party as well.  Please don't comment unless you plan to attend.  (I know that just about every one of you would like to attend, but if you leave me a comment about why you are unable to attend, that will just make more work for me trying to sift the yes's from the no's.)  I know you understand why I'm asking for only the YES RSVP comments.  I just can't mentally sort and sift right now.

Thank you for praying for us.  This is the hardest thing we've ever walked, but God is faithful and He is by our side.

PS  I will announce funeral arrangements on the blog once we have things finalized.

Wednesday, May 19, 2010

I Don't Wanna...

  • I Don't Wanna...say goodbye to my princess
  • I Don't Wanna...learn how to plan a funeral, particularly one for my baby girl
  • I Don't Wanna...pick out a casket
  • I Don't Wanna...pick out the outfit my baby will wear in her casket
  • I Don't Wanna...write the obituary for our Serbian Sensation
  • I Don't Wanna...sleep in my own bed tonight, I long for the hospital recliner by my daughter's side
  • I Don't Wanna...be home, I want the hospital by my daughter's side
  • I Don't Wanna...stare at my precious angel's empty toddler bed, which is next to my bed
  • I Don't Wanna...imagine waiting until Heaven to hear my sweet girl's laughter, excitement, squeals, bosses and giggles
  • I Don't Wanna...not stare into the big, dark brown eyes of my Serbian Sensation
  • I Don't Wanna...deliver the news to the orphanage where my daughter spent her first four years
  • I Don't Wanna...learn how to live after the loss of a beloved child
But Christyn Joy Patterson taught me to boss my heart.  Scripture tells me that my heart is deceitful above all things.  Right now my heart is shattered, and I feel as if I can't go on.  I can't stop the tears.  I am nauseated and shaking, trembling as if I have a fever, but I don't.  I must ask our great Father to boss my heart, to align it with Truth.

The Truth is that Chrissie's life was not cut one day short.  God numbered her days before He ever knit her in her mother's womb, before He ever called our family to be Chrissie's forever family.  God knew that on May 19, 2010, Christyn Joy Patterson would go Home.  Chrissie's greatest wish was a mommy and a daddy, and God knew that even though we would only have a total of 7 months with Chrissie (6 of those not spent in PICU), that He would make sure that Chrissie did NOT die an orphan.  God's Word tells the orphan in John 14:18 that He will not leave them as orphans, He will come to them.  God kept His Word to Chrissie. God could have taken Chrissie Home with Him on any other day of the year, at any point in Chrissie's life, but she was not to die an orphan.  She was to experience the love of her forever family and die with her mother right beside her, which was Chrissie's biggest fear:  "Momma no leave me."  God chose a mom for Chrissie who would NEVER leave her side.  I am humbled to have been that person, and it was my greatest pleasure in life to stay beside my daughter until the time of her Homecoming.

While Chrissie's life may appear to have been too short, God knew that Chrissie would live to be 4 years 7 months and 11 days before she danced with Jesus.  We could have chosen to postpone her surgery or not even do it at all, but we knew that was just as great of a risk as going forward with it.  If we had not chosen surgery, Chrissie would have died in our arms at home on this very day.  The difference would have been that most of you who are reading this would have never known our Serbian Sensation.  She would have died a quiet death at home, one that you would have never read about or even cared about for that matter.  God had HUGE plans for His precious jewel, Christyn Joy ("Jewelry") Patterson, and His plans for her have been completely fulfilled. 

The last 7 months of our lives have been the greatest and the hardest times of our entire existence.  Every second of every day since Chrissie officially joined our family on October 14, 2009, has been worth it.  None of us would trade it for the world.  The amount of pain we're in will not triumph the joy Chrissie brought to our family and to all those who met her in real life as well as those who only knew her through this blog.  Chrissie accomplished more for His Kingdom over the past 31 days than most of us will accomplish in our lifetime.

I want you to know that Chrissie battled this fight with all her heart.  Seriously.  Her heart continued to beat as she fought for her life this morning.  Chrissie's heart was healed here, and she was determined to proclaim His healing to the world.  Chrissie didn't give up her fight; God bossed her heart into perfect submission with His will.  May 19, 2010, the day Chrissie would dance with Jesus, leaving this world with her forever mommy by her side as Jesus welcomed her into His arms, holding her with a Love greater than her earthly mommy's love.  I know it must have hurt Chrissie to be the one to choose to leave her mommy, but she was the boss and I fulfilled my promise to never leave her, as she so boldly requested time and time again.

Christyn Joy Patterson, we will never leave you, sweet girl.  You will always hold a special place in each of our hearts that will never be the same.  You have left your fingerprint on more lives than we'll ever be able to count.  Our hearts will never be the same.  Oh, how my heart aches to hold you and love you and kiss you and stare into your sparkling brown eyes and pinch those precious chubby cheeks of yours, the ones that have a dimple just below your eye, like no other cheek I've ever seen.  Baby Doll, I love you so very much, and thank you, my precious angel, for forever changing my heart and my life.  Thank you for the best 7 months I've ever lived, sweet love.

I know you're able to see my tears streaming down my face, and I know you're telling me, "Momma no cry.  Momma no boo-boo."  You always cared so much about my happiness.  I want you to know, Precious Angel, that mommy will be OK because your Father loves me as much as He loves you, sweet girl, and that is a love like no one can ever fathom.  He will hold me and comfort me and enable me to go on living here on earth without you, but I want you to know, my love, that my  heart will never be the same.  And I thank you for that gift, baby girl.  Your life is to be celebrated and applauded.  You are one amazing warrior princess, girlfriend.  I love you with all my heart, and one day, hopefully very soon, Mommy will hold your perfect hand in Heaven where we will walk together eternally, hand in hand, heart to heart, mother and daughter.

Mommy and Chrissie, January 8, 2010

Dancing with Jesus

Chrissie has gone home to be with Jesus. Her heart has been healed and now she spins and she sways to the Cinderella song with Jesus as her dance partner.

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

Still doing compressions

It's been an hour or more...

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

Compressions restarted



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

Not looking good

Pyulse and heart is back but many signs not looking good. Doctor is worried. Please pray...

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

She's coded

Chest compressions

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

bleeding

Pray...lungs are bleeding lots.

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

In Honor of Chrissie: A Necklace Released on Her 1 Month Hospital Anniversary!

Here's the special surprise!

Today, May 19, 2010, marks the one month anniversary (31 consecutive days in the PICU) of Chrissie's admission to Methodist Children's Hospital in San Antonio, Texas.  Little did we know how God planned to use our precious princess to reach hearts around the world with her miraculous testimony of God's miracles, love, healing, and faithfulness.  Little did we know that we would still be in the PICU on life support machines after one month, but our God is mighty to save, and His presence is mighty indeed.  In honor of our Serbian Sensation, a blog reader has created a beautiful necklace to remind us all to pray for Chrissie and boss our own hearts into His perfect submission.  Without further ado, on this one month hospital celebration of Chrissie's miraculous life and God's mighty to save hand that is ever-present upon Chrissie, I'd like to show you this precious piece of jewelry in honor of our Precious Jewel, "Christyn Joy ("Jewelry") Patterson:

"Boss Your Heart" Necklace, A Fundraiser Necklace in Honor of Chrissie
$50/necklace with $30 from each sale donated to The Patterson Family
Sterling Silver, hand-crafted and hand-stamped with love, pink heart Swarovski crystal
Click HERE to Purchase

April 28, 2010 marked a day of mighty miracles in Chrissie's life.  Many refer to it as the "Boss Your Heart" day.  Click HERE to read the post that describes the miracles that occurred on "Boss Your Heart" day.

Shortly after that miraculous day, I received an email from a pastor's wife in Georgia namd Rachael who had been following our blog.  (This is a person I've never met in real life, but God has a way of bringing together His family in amazing ways!)  Here is part of what Rachael's email said:

"Your princess has pricked the hearts of so many! I love how people are finding Jesus thru her journey! Your a strong momma, and I know that God has amazing things planned for your future!



I won't keep you because i'm pretty positive you probably get a million emails a day.


The day you told your Princess to "Boss her heart" really touched me not because of her physical well being at the time (although that was top priority), but because us chics... US you & Me daughters of the king... sometimes need to stop and "Boss our heart"! We need to stop and tell our heart to line up with the TRUTH of what God has for us!


We believe so many things that don't line up with who God says we are! You have struck a cord in my heart that if more Princess's around the world would stand and boss their heart around we would have a whole lot less messy situations on our hands.... divorce, affairs, thoughts that wonder, speaking death over ourselves thru negative words etc..."

Rachael, this is such a true and profound statement about people bossing their hearts, and I had no idea God would use those words to lead you to create this necklace in honor of our princess.  Scripture tells us in Proverbs 17:20, "A man of perverse heart does not prosper; he whose tongue is deceitful falls into trouble."  It also says in Jeremiah 17:9, "The heart is deceitful above all things and beyond cure. Who can understand it?"  And more issues of the heart are addressed in Hosea 10:2, "Their heart is deceitful, and now they must bear their guilt. The LORD will demolish their altars and destroy their sacred stones."

We need to boss our hearts AWAY from what the world tells us is important and align our hearts with the Truth of God's Word, which tells us our hearts are deceitful above all things.  The surest way to mend our broken, hurting hearts is to ask our mighty God to circumcise our hearts, to remove all the boo-boo's and mend our hearts to be made new in Him.  You've heard me quote my scripture prayer for my personal heart before, but here it is again:  Deuteronomy 30:6, "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."

The truth is that ALL of our hearts are broken without the Lord, and we are desperate to have Him repair our hearts.  He is able, willing, and ready to make our broken hearts become brand new.  That's what faith can do.  (Remember Chrissie's song and the lyrics of "That's What Faith Can Do"?!?)  All we have to do is submit to Him and ask Him to create in us a new heart, one which is more like His.

If you're ready for God to boss your heart instead of allowing the world to boss your heart with deceit and lies and barriers that keep us from fully experiencing His perfect goodness, the goodness that comes when we're able to love him with all our heart, with all our soul so that we may LIVE (Deut 30:6), please begin praying this prayer of circumcision found in Deut. 30:6 for yourself.  God will do mighty things to mend your broken heart.  (And it doesn't matter how shattered your heart is, He is mighty to save and He will do a massive open-heart surgery in your heart if you will ask Him and allow Him.)

This beautiful necklace can serve as a daily reminder to allow God to boss your heart with His Truth, His Love and His Goodness, while at the same time serving as as a prayer reminder for our princess. 

Here is a description that Rachael wrote on her site about the hand-crafted necklace, lovingly created in honor of our Princess Chrissie, the Serbian Sensation, who is teaching us all how to boss our hearts!

Description



Sometimes I get the opportunity to "meet" people in the internet world who really touch my heart.


I found http://allarepreciousinhissight.blogspot.com/ and learned about Chrissie, and her amazing family.


Chrissie is currently in the hospital fighting for her life. She was adopted within the last year i believe and just under went open heart surgery and has had several complications.


One thing I love is her Mother's faith and strength.


There was a day where her heart was struggling... you can go to her blog to read about it, but she told Chrissie to "Boss Her Heart". When she did this her levels all started coming up to where they needed to be!


I started thinking about it, and as women we our emotion based so much. We rely on what we feel. What if we took time to "Boss Our Heart" and tell it to line up with what God wants us to think and believe about ourself.


Psalm 147:3 says, “He heals the broken hearted and binds up their wounds.”


This is a portion of an email between Lorraine (Chrissies mom) and myself.


So many of us are broken hearted, and we need Him to bind up our wounds and heal our broken hearts. Our hearts are being deceitful, as we are taught in His word, but unfortunately, the world tends to “boss” our hearts and tell us what to believe instead of allowing His Word to boss us.


This necklace is going to be $50 , and I'm donating $30 of it to Chrissie's family to help with medical expenses and to also help with the commute which is I believe two hours away.


Please read about Chrissie here http://allarepreciousinhissight.blogspot.com/.


About the Necklace: Sterling Silver dainty Ball Chain that has hung on it a beautiful washer shaped sterling silver piece that has the words " Boss Your Heart". Hanging in the middle is a beautiful swarovski crystal pink heart.


This necklace is a reminder to each of you to boss your heart as well as a reminder to be praying for Chrissie!


All necklaces will ship within 2 weeks of order. They will be shipped usps 2-3 day priority.


Anyone who purchases this will also receive a $5.00 gift certificate to my shop for a future purchase.

Tuesday, May 18, 2010

Pray for "Silent Night"

Chrissie had a good day without any big crises (after her suture procedure this morning, of course).  At shift change (like always!), she started bleeding in her lungs, but it wasn't a huge amount.  It was fresh blood from the lungs due to the pulmonary hemorrhaging, but the amount was much more manageable than previous lung bleeding episodes.  The bleeding tonight is most likely due to the increase in Heparin (blood thinner) that Dr. Porisch is using to try to keep the clot in her pulmonary artery from growing larger.  It's a balancing act with pros and cons, but right now, it is in Chrissie's best interest to try to keep the clot from growing.  The Heparin dosage is tiny, but apparently it's enough to make Chrissie's pulmonary hemorrhaging act up.

The night shift is NOT the time to start bleeding from the lungs.  It's just harder to gather all of the right people in the right places, and the lung bleeding has jeopardized Chrissie's life before, so I am praying that she will NOT have any more lung bleeding episodes tonight (or ever!).  The oscillator is the best ventilator to be on to reduce chances of lung bleeding because of the way it works in putting more constant pressure on the lungs (like when we apply pressure to a cut to reduce bleeding), so that is in our favor, but the Heparin is not in our favor with regards to pulmonary hemorrhage.  That's the balancing act.

I have to just thank you all for revving up the prayers for Chrissie.  I am so grateful for the awesome round-the-clock prayer coverage from the army of prayer warriors.  You seriously will never know how comforting it is to know that at every second of the day, someone is lifting up a prayer for Chrissie.  This helps me to sleep when I get the opportunity, between alarms and/or crises.  God gives me a comfort that comes through your prayers for Chrissie as well as for me.  We are comforted by all of the prayers lifted, and blessed by the many gifts you all keep showering us with here at the hospital.  I'm continuously amazed at how God sends angels to deliver cards, gifts, food, drinks, care packages, chocolate dipped strawberries, cookies, crosses, and on and on and on.  It's amazing how He leads His army to protect and provide.  Thank you for marching onward with the Christian soldiers.

Please join me in praying for NO LUNG BLEEDING and NO CLOT GROWING!!!  Two opposite needs with regards to the coagulation of the blood, but our God is the only One capable of handling such a delicate balancing act.  Would also love prayers for an overall peaceful night full of sweet dreams and no crises with all stats and sats where they should be...heart rate, blood pressure, oxygen saturation, lungs and pulmonary artery clot:  all good, all night.

To God be all the glory.  He is mighty to save.  Keep praying...

PS  I have a very special surprise to announce in a separate post.  Be on the lookout! :-)

comments

I didn't mean to imply that I didn't want you all to comment on the last post. Sorry, I wasn't clear on my word choice there. I meant to convey that I would rather not hear people telling me what the hospital or staff should have done differently. What's done is done and I don't have the reasons, but God does. It may have been an urgent situation where they didn't have time to order and administer Lidocaine. It may have been that they thought she wouldn't need the extra local since she had morphine. I don't know the reasons, so I just wanted to avoid a lot of comments about what the doctor and nurse should have done differently. I treasure your comments, so please don't withhold your encouragement and love and cyber hugs! :-)

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

Mom's 30th Day Hospital Rant

I think I've done a fairly good job of holding in anger and frustration in a public fashion along this roller coaster journey thus far, but this morning's suture episode has broken me.  I am going to post a rant here, and I'd rather not have comments right now that tell me what should have been done in this situation because it's over and done with.  I just want to journal what has occurred and what I am feeling as the helpless mom to my warrior princess who has been through so much.  My prayer is that one day Chrissie will get to read this journey through her momma's eyes via this blog, and I can't keep in my thoughts right now; I need Chrissie to know how I grieve for her and her situation.

My intentions are not to criticize hospital staff or doctors.  It is what it is.  There's nothing I can do to change things.  And that's mostly why I'm ranting right now.

Helpless.

Chrissie is helpless.

Momma is helpless.

Neither of us can do anything to change the situations and crises that seem to occur around here on a daily basis, sometimes multiple times/day.  One consistent thing is that Chrissie seems to like throwing the monkey wrench at morning shift change.  (Glad she waits till the  new staff is arriving, fresh and ready to tackle the day, plus more doctors are here making rounds in the mornings.)  So, the timing is OK, it's just that I'm always feeling helpless.  I can voice my opinion and advocate for my daughter, but in the end, I can't do anything to relieve the situation.  I can't take away the pain.  I can't take away the tears.  I can't pick up my crying daughter and hold her and tell her that everything is going to be OK.  I can't kiss the boo-boo.  This is what moms do.  I think the toughest thing about being here is that I can't do the typical fix the boo-boo things that moms are notorious for.

I am sitting here crying as I type this.  I don't cry easily.  Those of you who know me are familiar with my prayer that God would circumcise my heart to remove the calluses and expose me to the raw emotion type of agape love for others that only comes through God.  The kind of love that God gives us.  That's the kind of love that I've asked God to give me so that I can give it to others.  God has been doing a mighty work renovating my heart over the past 8 years or so, since I really began to pray this prayer about circumcising my heart.  Part of what His work looks like for me is the ability to cry with empathy, sympathy and emotional pain for others.  I used to have such a calloused heart that I didn't cry for the orphan.  I didn't really care that children in other countries who have defects such as Down Syndrome end up being chained to metal cribs with no clothing or food or stimulation or diaper changes for 23 out of 24 hours/day, with the hopes that they'll just wither away over time so that they do not burden anyone.  My heart was so calloused that I would just ignore the hurts around the world.  I mean, if it was my own child, sure I would cry if they had a severe illness or high fever or major boo-boo, and surely I'd attack with Momma Bear claws if someone were to torture MY child, but I wouldn't react with that same type of love for someone ELSE's child.

Then God started doing a great work in my heart.  He opened my eyes to others instead of self.  He caused me to hurt, physically and emotionally, for the orphan who is forgotten and hurting.  He brought 3 orphans into my life to forever change me, inside and out. 

This hospital experience with Chrissie, an orphan who was once the love of no one's heart, has changed me more than any experience I've ever been through.  More than marriage.  More than childbirth.  More than anything I've ever been through.

That is why I sit here in tears typing up my rant.  My love for my Serbian Sensation does not differ from my love of my bio son, Parker, my Colombian daughter, Meribeth, my bio daughter, Mattie, my bio son, Sawyer, or my Haitian son, Kiefer.  Chrissie is my beloved daughter, whether she was delivered from my womb or delivered from my God.  There is no differentiation in my heart. 

So, back to my rage that fueled this rant:  When I was told this morning that they were going to have to suture this chest tube back in, my first question was, "So, are they going to give Chrissie a local anesthetic?"  The nurse said no, that she had given her some extra IV morphine for it. 

Inside, I knew that wasn't going to be enough.  My daughter has been on morphine for weeks now.  One extra dosage of morphine will chill her out, but it does NOT take away the pain of stitches!!!  (I've requested extra morphine for Chrissie on occassion when she's in pain from being repositioned or messed with or when her shingles outbreak was bothering her, and the extra morphine relieves some of the anxiety and mild pain, but I knew that extra dosage would not relieve the pain of enduring stitches.)  So, I asked what other meds Chrissie currently had in her system.  Oral Chloryll and her regular IV meds.  Since I've been by my daughter's side 24/7 for 30 days now, I know this combo is not enough to help my daughter not feel the stitches.  Chrissie was due for her oral Ativan and Methadone, but those take 30 minutes to work since they're oral (which are given in the feeding tube so they can go into her stomach).  The nurse had to hold some of Chrissie's oral meds in the night so that her blood pressure didn't drop too low.  (She also had to go up on Dopamine to .7 to keep her blood pressure up high enough, just FYI.)  This meant that Chrissie didn't have the "good" pain meds in her system since the orals had worn off and were due at the same moment she would endure having stitches placed in the side of her abdomen.  (Which, by the way, were not administered until after her procedure, when I requested something be done to help relieve my daughter's tears and pain after it was all said and done.)

Everything happened so quickly this morning after I was notified of this procedure, so I realized we were in another dire situation where they were acting quickly.  My guess is that they were concerned the right lung would collapse (or perhaps it already was collapsed) by the build up of fluid that needed to be drained rapidly.  As I was sitting beside Chrissie, crowded by people and equipment, I continued to question anesthesia and pain meds, but the doctor began stitching the hole around the chest drainage tube closed as I questioned things in a non-successful manner.  Blood was pouring down Chrissie's side as tears poured from her eyes.  There was nothing I could do.  Chrissie's blood pressure sky-rocketed (during the entire procedure), indicating she was feeling the pain of her sutures being placed.  I've never seen this amount of tears pour out of Chrissie's eyes since her 30 day stay in the hospital.  It was like a faucet had been turned on, and the tears were literally steadily streaming from her eyes, while her head lay turned to the side, on her right cheek.  It looked like a faucet of tears running across Chrissie's nose and onto the cloth that lay beneath her right cheek.  The tears didn't come one at a time crododile tears as I've seen before. This was a steady stream, for about 10 minutes.

Do you know how helpless I felt?!?  I could do NOTHING but watch my daughter "bawl" as she lay paralyzed on a hospital bed being sewn up.  No ability to say how much it hurt, no ability to say, "STOP, I need more medicine, no ability to scream, no ability to thrash, no ability to kick or hit or protect herself from this pain because of the medically induced paralysis.  The only mechanism Chrissie could control were her tears, which she shed heavily.  I soaked up her tears and told her how sorry I was, but there was NOTHING I could do to take away the pain.

The suture ordeal lasted no longer than ten minutes, but the tears continued to stream from Chrissie's eyes for another five minutes, still with high blood pressure, and then tears pooled instead of streaming for another 10-15 minutes after the procedure.  I kissed my princess, rubbed her hair, stroked her forehead, prayed over her and continued to soak up the tears, but what I wanted to do was pick my child up, wrap her in my arms and rock her while she cried.  I wanted to protect her from the pain, but knowing I couldn't do a thing, I just sat here helpless and defenseless, much like Chrissie, only I have a voice, just no ability to do anything beyond speaking my thoughts.

So, I began to feel angry inside.  I began to boil as I saw the amount of blood that ran down my daughter's side during the suturing, imagining how painful this must have been, knowing Chrissie felt this because of her sky-high blood pressure as well as the fountain of tears.  Hard stuff to endure.  Harder for Chrissie than for me, but I am her mom, and I love her dearly, and no mom wants to see her own child suffer, particularly as she stands bedside and watches the suffering with an inability to stop the suffering.

God reminded me of the millions of orphans around the world who cry this same river of tears on a daily basis as they endure suffering day in and day out, only they have no mommy beside them to whisper words of comfort or wipe their tears from their tear-stained faces.  I was grateful that my former orphan was now home with her forever family, surrounded by a mother's love, and grateful that God gave me the ability to stay by my daughter's side, day in and day out, 24/7, so that she will always know how much I love her and how dedicated I am to her, my precious princess.  And even when I can't do anything to fix the boo-boo, I am here to wipe her tears and tell her how much I love her and how sorry I am that she's having to endure this pain.

And grateful that God does the same thing for us, day in and day out, 24/7.  He is here to wipe our tears, to show us His unending dedication to us, \to offer His unfailing love for us, to hold our hands and pick us up and rock us when we are willing to climb into His arms.  I'm fixing to crawl into His lap and let Him comfort me, knowing He has my daughter in the palm of His hand, and He wants me there, too.  Thank you is not enough.

PS  The post-suture, post-chest suctioning chest x-ray showed that it worked.  Chrissie's lung was no longer compressed by the fluid build-up.  Thank you, God, for medical staff who know their stuff and are willing to work quickly to fix boo-boo's, even when I can't do anything to relieve the pain and suffering.  Forever grateful to the staff at Methodist Children's Hospital!

Chrissie's photo about 30 minutes after her chest tube suturing.

May God circumcise your heart so that you will cry for the orphan and reach out to live pure and undefiled religion as expressed in James 1:27.
  

Suture

It appears that the last chest drainage tube has an air leak around it (the sutures have fallen out and the tube slips in and out of Chrissie's chest). This would normally be OK as long as there's not a lot of fluid inside that needs to drain out. But this morning's chest x-ray showed that Chrissie's right lung is being compressed due to fluid build-up around it. So, they're trying now to suture the tube back in place, closing the hole to reduce the air leak, then they'll try to suction out the extra fluid.

Chrissie's blood pressure is high as she is NOT liking this procedure.

Please pray for our princess.

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

Just Sayin'...

God hears your prayers! I typed the last blog entry and tried to go to sleep, only to be woken a couple of minutes later to alarms that Chrissie's heart rate and blood pressure were too low. I got up and talked to her and prayed over her, then saw your prayer comments coming in around 1:30am. And guess what? Chrissie's blood pressure rose to the PERFECT range and her heart rate rose as well!!! Just sayin'...God hears your middle of the night cries for His princess!

We turned Chrissie on her side (we turn her every two hours to help reduce bed sores and move things in her lungs), but she's on her bad side this turn. This means she's turned on her left side with her good lung down, making it a little more challenging to keep oxygen sats up. We shall see. For those in a different time zone, particularly Chrissie's Serbian prayer warriors, keep praying for Chrissie to have a calm, peaceful, uneventful night with perfect blood pressure, perfect heart rate, perfect oxygen sats, and perfect blood gasses. Oh, and no bleeding or clots/clogs in the breathing tube would be superb!

To God be all the glory! He is mighty to save! Keep praying...

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

Day 30 Middle of the Night Update

If you're awake and receive this in the middle of the night, please just say a little prayer for Chrissie to have an uneventful night!  She has a new nurse who is young and not as experienced as the other nurses, and while she's sweet as can be, she doesn't know Chrissie's history of scaring the heck out of the medical staff with her extreme swings!  Chrissie's blood pressure is at the lower end, and the nurse is trying to follow orders to wean Chrissie from Dopamine, which is a drug that constricts the blood vessels and reduces blood leakage from the vessels, which is a symptom of sepsis, causing low blood pressure.  The nurse turned off the Dopa mine about an hour ago, and Chrissie's blood pressure went too low, so she turned the medicine back on.  Chrissie's blood pressure is sticking right at the lowest "acceptable" rate for her, and I don't want to go to sleep because I want to keep an eye on it, but I'm sleepy.  The nurse will be watching, but I've seen Chrissie flat line in a matter of seconds, and I saw her lose her pulse just 17 hours ago when her blood pressure went too low.  I'm really praying for a good night that is uneventful, so I ask you to join me in that prayer!!!  (The nurse may need to hold off on some of Chrissie's oral pain/sedation meds in the night if her blood pressure remains this low, as those could lower it even further), but that's a balancing act b/c we don't want Chrissie to gain too much movement and start coughing, which could cause her to bleed.

The coagulant factor of the blood tests shows that as a result of the sepsis, the blood is thinner than normal, but not as thin as it was with Heparin.  So, there's still a chance of bleeding in the lungs with the thinner blood, but, of course, we're all praying this won't be the case.  Praying the blood doesn't continue to get thinner and thinner over time as well.

Chrissie's lung x-rays have been her best x-rays yet, so we're really hoping that tomorrow Chrissie will be able to switch back to the conventional ventilator. Of course that will be dependent upon how Chrissie does tonight, whether she has any crises, etc.  Praying for a peaceful, quiet, calm night.  (And if it's not a peaceful night, that God would surround Chrissie with the exact nurses and staff that she needs in order to stabilize her and keep her from harm.)  Praying harder for the peaceful night!!!

Someone asked about the acidotic/alkolotic state and how we know this and what it means.  Chrissie has blood gas tests run every 6 hours (or drawn at extra intervals if adjustments are made to the ventilator and/or meds) to check all kinds of levels, which help the doctors stay on top of any potential problems.  The gasses that were run this morning showed Chrissie was in an acidotic state, which meant her Co2 was too high and her pH was too acidic.  (Google acidosis to learn more).  Not a good state to be in because tissues and organs can die and fail if one remains in that state too long.  But God pulled Chrissie up out of the acidotic state, and her gasses continued to improve every 6 hours  until this evening's blood gas results, which showed they'd improved "too much".  (Meaning they went to the exact opposite end of the spectrum, now having too little Co2 and too much alkalinity in the blood.)  Again, not good.  We need Chrissie to have blood gasses that are balanced between those 2 extremes with a normal pH and normal everything else!!!  A normal Co2 for Chrissie would be between 35-45.  It's been as high as 187 and as low as 25.  The low Co2 blood gas result earlier tonight showed that the oscillator is actually doing too much work for Chrissie, blowing off too much Co2 gas, so they turned down a few of the settings.  Then, an hour after adjusting the settings, they saw her blood gasses were returning more in the normal range.  Her Co2 level was at 37, which is perfect for Chrissie. 

God is good and He is mighty to save.  He has wrapped His loving arms around Chrissie and surrounded her with staff who know how to save lives and work with princesses.  A nurse earlier reminded everyone that Chrissie is the boss around here, and we all do what she says.  I know Chrissie is thrilled that she's finally succeeding at being the boss of everyone!!! :-)

To God be all the glory.  He is mighty to save.  Keep praying...

Monday, May 17, 2010

Extremes

Chrissie has gone from being acidotic (too much acid on the pH scale) to being alkolotic (EDIT...I originally posted "alkalinic", which is not the proper term...too much alkalinity in the blood is referred to as being alkolotic). Wow! Those are total opposite extremes, and Chrissie has not been alkolotic ever!!! (We don't want her to be at either extreme. We want a perfect pH balance!) They will adjust the oscillator settings (turn them down) to reduce the factors that cause too much alkalinity in the blood, so maybe Chrissie is heading in the right direction! Our God is mighty to save, and he's definitely answered your prayers!!! Now just pray for a perfect pH balance, open lungs, no clots or clogs in the breathing tube, and for the clot in the pulmonary artery to miraculously dissolve!!! God is definitely honoring your petitions on the Mighty to Save Monday of fasting and prayer for Miss Chrissie! Wow! I am in awe. To God be all the glory. He is mighty to save. Keep praying...

Another Edit:  I want to document that Chrissie's Co2 came back at a level of 25!  That's the lowest it's ever been, which is part of the factoring in her being classified as alkolotic.  The lowest I think Chrissie's Co2 has ever been is 47!!!  Oh my goodness, this princess likes to keep everyone guessing! :-)


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

Mighty to Save Monday Afternoon Report

"The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing."  Zephaniah 3:17

I am most grateful on this day for our MIGHTY TO SAVE God.  He has taken great delight in Chrissie, He has quieted her with His love, and He has rejoiced (and continues to rejoice) over Chrissie with singing.  Today was a new way to experience His mighty presence, yet again.  I thought we'd been through it all actually, but this morning's brush with death came with symptoms I had not yet seen.  Praising God for His mighty hand reaching out to save our Serbian Sensation, yet again.

So far, Chrissie is hanging in there.  They sent her blood for culture this morning to determine if she indeed has bacteria in her blood, and, if so, what type so they can tailor the antibiotics.  The blood culture won't be back for 24-48 hours, depending upon the growth displayed over that time frame.  In the meantime, Chrissie was put on very strong antibiotics with hopes of combating the bacteria while we wait for culture results.  (Chrissie just had cultures taken for every bodily fluid from every orifice, including her blood, a few days ago (prior to this septic incident), but all of those cultures have been negative for infection.)  So, if Chrissie does have bacteria in her blood, it is most likely a very recent infection, so we may have caught it very early.

Chrissie now has an arterial line in her right foot, which gives us an accurate reading of her blood pressure at all times.  It was scary this morning to lose Chrissie's pulse and see the heart rate sky rocket as a means of compensating for the lack of oxygenated blood flow through the body.  This morning's episode was a new scary moment for me, as I've never seen her do the things she did to scare us all this morning.  The one constant thing is that I know the reaction of the doctors and nursing staff now.  It am keenly aware of the levels of concern, unfortunately.  Now I'm familiar with a new life-threatening condition and symptoms.  One of the hospital staff told me today that they would be giving me an honorary medical degree upon Chrissie's discharge from the hospital one day!!!  Kind of funny how much I've learned after 29 days of on-the-job immersion training.  No better way to learn, but definitely not something I ever wanted to seek!

Chrissie's kidneys are up and functioning again on their own.  Her blood pressure is good again, with only a tiny bit of help from outside meds.  Her heart rate is stable, without medications.  The oscillator is working properly, inflating Chrissie's lungs with good movement and keeping her oxygen sats in the 90's.  Chrissie's temp has fluctuated between 96 and 99, but she hasn't had to have additional doses of Tylenol since this morning's last dosage. 

I would say that Monday's Mighty to Save fasting and prayer has been successful thus far, indeed!  Chrissie started this festival of prayer with a big bang...fireworks at 7AM!  No better way to get her prayer warriors fired up, huh?!?  There is no doubt that our God is MIGHTY TO SAVE!  Chrissie could have lost this battle in an instant this morning, but God has chosen to continue to bless us with our precious princess' life here on earth.

For now, we wait to see what God chooses to do and when He chooses to do it.  Chrissie cannot go into the cath lab in the condition she is in.  It would be best to be off the oscillator and know that her sepsis is under control.  Dr. Porisch is aiming for Wednesday or Thursday, unless something happens with the clot that would create an emergency situation that would force an emergency visit to the cath lab, which we are praying against.  We now have more time that God would simply miraculously dissolve the clot.  We know nothing is too hard for our Mighty to Save God who is able to move mountains!

We are so grateful for our Mighty to Save Jehovah Rapha, as well as for His army of prayer warriors.  We have a lot to pray for.  (One thing I haven't mentioned is that sepsis is known to cause a natural thinning of the blood, which is risky for Chrissie if it gets too thin because then her lungs are at further risk of bleeding.)  Please continue to lift our princess up to her Daddy, the King of Kings.

Mighty to Save Lyrics, by Hillsong United

Everyone needs compassion,

Love that's never failing;
Let mercy fall on me.

Everyone needs forgiveness,
The kindness of a Saviour;
The Hope of nations.

Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.

Forever, Author of salvation,
He rose and conquered the grave,
Jesus conquered the grave.

So take me as You find me,
All my fears and failures,
Fill my life again.

I give my life to follow
Everything I believe in,
Now I surrender.

My Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.

Forever, Author of salvation,
He rose and conquered the grave,
Jesus conquered the grave.

Shine your light and let the whole world see,
We're singing for the glory of the risen King...Jesus (x2)

My Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.
Forever, Author of salvation,
He rose and conquered the grave,
Jesus conquered the grave.

My Saviour, you can move the mountains,
You are mighty to save,
You are mighty to save.

Forever, Author of Salvation,
You rose and conquered the grave,
Yes you conquered the grave
Click HERE to view the Christian video of the song Mighty to Save by Hillsong United.

Lyrics | Hillsong United lyrics - Mighty To Save lyrics

Probably No Cath Today

Well, Chrissie threw a new one at us all this morning.  At around 6AM, Chrissie's oxygen sats were dropping.  They had been consistently lowering at a slow pace for a couple of hours prior.  When her O2 sats got into the 70's, there became concern and the RT came in.  (They had been trying not to suction her to lessen risk of bleeding.)  It was determined that some of the old blood from Chrissie's lungs had formed a clot in the breathing tube, which wasn't allowing any of the air/oxygen from the oscillator to get into Chrissie's lungs.  There was no movement in Chrissie's chest/lungs at all.  They had to remove her from the oscillator and bag her while using a separate catheter to try to suck the clot out of the breathing tube.  They were able to get lots of clots and "gook" out of the tube, but in the process, Chrissie's heart rate shot up to 200 (it had been around 80), and she lost blood pressure.  (This apparently means that because her blood pressure went so low/slow/nonexistent, the heart tried to compensate and work harder to get blood out to the vessels.)  We had a serious situation on our hands, but, once again, the amazing staff at Methodist Children's ICU pulled through and saved Chrissie, yet again.  Praise the Lord!!!

They believe that Chrissie is now septic, meaning she has an acute infection in the blood more than likely.  (We had been praying against infection, but the likelihood was high since her chest was open for so long and she's had so many tubes hanging out of her body, plus the fact that she's been in the hospital for 29 days now.)  This brings a whole new set of challenges.  Chrissie is now back on several medications to regulate blood pressure, heart rate, constriction of blood vessels, antibiotics, anti-fungal meds, heart meds, etc.  (Many of these meds were the same ones she was on during her earlier days in the PICU.)  Chrissie's blood gasses came back showing acidosis and a few other bad things, plus her kidneys weren't putting out any urine, which were all indicators of being septic.

Here's a little blurb about sepsis from Wikipedia:  "Severe sepsis occurs when sepsis leads to organ dysfunction, low blood pressure (hypotension), or insufficient blood flow (hypoperfusion) to one or more organs (causing, for example, lactic acidosis, decreased urine production, or altered mental status). Sepsis can lead to septic shock, multiple organ dysfunction syndrome (formerly known as multiple organ failure), and death. Organ dysfunction results from sepsis-induced hypotension (< 90 mmHg or a reduction of ≥ 40 mmHg from baseline) and diffuse intravascular coagulation, among other things."

So, Chrissie is now battling something new and life-threatening.  Dr. Porisch is reviewing all of the data to determine if the heart cath is even a possibility at this point, but it's most likely not given the sepsis.  She is conferencing with a few brains, and we'll know sometime soon what their decision is.  Please pray for the infection to clear and for Chrissie to stabilize again.  She's taken many steps backward the past few days, and there's lots to fight right now, so your prayers are most appreciated.  Lots of obstacles from the pulmonary artery clot with no blood flow from heart to right lung, to the issue of bleeding in Chrissie's lungs, and now the sepsis and infection and blood pressure issues and all of the new meds that were added.

Keep praying to our Mighty to Save God!!!

Stable again

They've got Chrissie stabilized again. Praise the Lord!

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

Septic?

There are some heart issues happening now. Dr. Tenner thinks Chrissie may be septic. Starting new meds, fluid and putting arterial line back in.

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

lungs

Pray...issues with lungs, bleeding and clots.

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

Sunday, May 16, 2010

Fasting and Prayer for Mighty to Save Monday!

Just a quick note to ask all of you dedicated prayer warriors to consider fasting and praying for Chrissie tomorrow, May 17, on "Mighty to Save Monday"!  (Love that suggestion, Carrie, and thanks also for the sweet card and book!)  Oh, and I apologize for referring to tomorrow as APRIL in an earlier post...major sign of sleep deprivation! :-) 

Chrissie made it through the day without any more significant lung bleeding, thanks to the oscillator settings and our mighty God.  Chrissie has been paralyzed all day (on a Vec drip) and will continue to be paralyzed until her heart catheterization Monday afternoon.  Please pray that Chrissie's lungs won't start bleeding again.

Chrissie will have her heart cath sometime in the afternoon more than likely.  Dr. Porisch wants/needs Dr. Kupferschmid to be in the cath lab with her, and Dr. K will be doing surgery on a different child first thing in the morning, so Chrissie will be after that surgery.  Dr. Porisch was thinking sometime between 11AM-1PM.  I'm thinking it will be toward the latter part of that time frame, most likely in the afternoon.

The heart catheterization will be a really big deal, which is why I'm grateful for all of you who are willing to fast and pray (or just pray, He hears all prayers lifted).  Dr. Porisch is arranging for a variety of "brains" (cardiologists and other heart cath personnel, as well as Dr. K) to be present during the heart catheterization so that they can help come up with ideas, guidance, information, decision-making, etc.  Dr. Porisch will be the one actually performing the cath, but many brains will be helping her make decisions throughout the procedure.   A heart cath is a procedure is where Dr. Porisch will insert a small camera catheter into an artery and/or vein/vessel through Chrissie's groin, and then the camera catheter will go all the way up into Chrissie's heart and pulmonary system.  Dr. Porisch's main objective with the cath is to break up the clot that has formed in Chrissie's pulmonary artery right valve, which has completely blocked the blood flow from the heart to the right lung.  (The clot is huge; atleast 10 mm in diameter and probably about the same length as well.  The clot, the cath, and the breaking up of the clot is all extremely risky.  This particular cath will be extraordinarily complicated due to Chrissie's anatomy (which consists of some natural parts that Chrissie was born with as well as a cadaver part and several man-made parts) and unique situation.  (She is by far a "normal" case, as always.)  Dr. Porisch is hoping that she'll be able to insert a wire into the clot to break it up and use a vacuum/suction tool to try to quickly vacuum all of the pieces of the clot into the catheter so that the smaller broken clot pieces don't go to other areas and cause obstruction.  There are just so many obstacles and so many challenges and so many risks that it would be impossible to explain them all, but, trust me, Chrissie needs much prayer, and, even more so, Dr. Porisch and the team.  (Also, Chrissie will need to have many other issues addressed during future heart caths, but due to limited amounts of time available to do work during a heart catheterization, these will most likely not be addressed during Monday's cath.)  Dr. Porisch believes this cath will be a very long procedure due the complexity of the situation.

Dr. Porisch sat down with Matt and I for almost 2 hours this afternoon to explain everything and show us the results of the CT Angiogram.  She drew diagrams and explained everything with great detail.  We are so blessed to have her as Chrissie's cardiologist.  (Dr. Porisch wasn't on call this weekend, and I was so hoping she wouldn't have to leave her family this weekend, yet she came to the hospital both Saturday and Sunday to check on Chrissie and meet with us.)  Anyway, we walked away from our meeting with a much greater understanding of everything.  The cardiovascular operating team and Dr. Kupferschmid will be ready to perform another open-heart surgery if anything occurs during the cath that would require surgery to fix it.  It's all so very risky, so please pray for Dr. Porisch and the team.  I simply cannot imagine the weight that Dr. P must feel right now.  (If you read this, Dr. P, please know that we absolutely trust you and if God chooses something different than our prayers, we trust His sovereignty and do not want you to feel responsible for the outcome.  It's all in God's hands.  This we know and trust.) 

So, here are the specific prayer requests for Mighty to Save Monday:
  • That Chrissie's lungs will not start bleeding again.
  • That Dr. Porisch will be able to successfully break up the entire clot, vacuum all of the pieces out, and not incur any complications.
  • That God would guide Dr. Porisch's every move, guide the catheter and tools to EXACTLY where they need to go, and that He would give wisdom to all those involved as the extra "brains" working alongside Dr. Porisch in the cath lab.
  • Wouldn't it be MIGHTY if God would perform a miracle and break up the clot on His own?!?  Can't help but ask for this because then Dr. Porisch could do other necessary things during the heart cath instead!
  • That anything that needs to be discovered about Chrissie would show up boldly in the cath lab and that Dr. Porisch would be able to fix them without any complications.
Oh, and a special announcement:  DRUM ROLL please...Mighty To Save Miracle:  The CT scan of Chrissie's head was "normal".  To God be all the glory!  It is only His mighty to save Hand who could possibly protect Chrissie's brain from all of the traumas she's been through, particularly the two times that her heart completely stopped (and one of those times was an entire hour!).  Our God is MIGHTY TO SAVE!

To God be all the glory.  He is MIGHTY TO SAVE.  Keep praying...


movement

The oscillator was able to open Chrissie's lungs to where there is movement now. The pressure of the oscillator will hopefully stop or atleast slow the bleeding.

Heparin (blood thinner) was stopped, which puts us back at risk for the clot at the pulmonary artery to grow larger, which is extremely risky. We're in a God situation where we're dependent upon Him to do His thing...keeping the clot from growing while keeping the lungs from bleeding. It's a balancing act, but I have my faith in the One who will show His tightrope walking skill with great awe at this world famous, sold out circus!!!

To God be all the glory. He is mighty to save. Keep praying...

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

oscillator

Chrissie is now hooked up to the oscillator. It's set to the highest possible settings. Keep praying...

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

Bleeding big time

Chrissie's lungs started bleeding about 30 minutes ago. Not good. Setting up oscillator now. Not stopping. No movement in lungs rigt now, even with bagging. Pray...

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

Obituary for "E"

If you prayed for "E" and/or are praying for his mom and family, please consider taking a moment to sign the guestbook at "E"'s online obituary.  You can click HERE to view it.  There's another online guestbook HERE.  I'm not sure if the family has a preference, so I'm including both links.  I think it would be a blessing to E's mom if you would leave her a message that you're praying for her and/or leave her a Scripture of encouragement.  Thank you!

Saturday, May 15, 2010

Day 27 Update After Tests...Not so Good News

Forgive me for not posting sooner, but I did go to Seaworld with my family after Chrissie returned from her CT Angiogram test this afternoon.  Chrissie did great in her test, in terms of lying still and no complications.  My mom came to the PICU around 2:30PMish, and Dr. Tenner (pediatrician on call) told me she would call me with the results of Chrissie's CTA as soon as the cardiac radiologist, Dr. Lane, finished reading it, and she encouraged me to go have fun with the fam.

I met Matt and the kiddos at Seaworld around 4PM.  Sawyer had spent the night with our friends, The Greens, because he was supposed to have a baseball game today, but it ended up being rained out.  So, they packed their bus (RV) up and headed to Seaworld to meet us.  This weekend Seaworld was hosting "Praise Wave", a festival of Christian bands.  We were all excited to go, but I had an anxiety about leaving Chrissie that wouldn't go away.  I didn't hear back from Dr. Tenner, so around 6:30PM, I decided to call the PICU to inquire about the results of the CTA.

Dr. Tenner gave the phone to Dr. Porisch, who wasn't supposed to be at the hospital this weekend!  So, I figured that something was array with Chrissie's results.  Dr. Porisch explained a few things to me, but I don't even recall everything that she explained right now because I was at Seaworld amidst a Christian concert when I talked to her!  The main thing that is of major concern is that Chrissie has no blood flow from the homograft (cadaver) pulmonary artery to her right lung.  Apparently she did have flow at one time, but there is no flow right now.  Dr. Porisch believes this is due to clotting in her multi-collateral arteries (I think) which then backed up to the homograft pulmonary artery at the heart, causing a blood clot at her heart, which is blocking flow out of the right side of the pulmonary artery which doesn't allow any blood to flow to the right lung.  (I'm probably butchering this description, but I do know that Chrissie is in extreme risk right now.)

I'm not exactly sure what all of this means, and I don't know all of the risks, but I do know that death is a factor, so Chrissie needs major prayers.  Dr. Porisch put Chrissie on Heparin, a blood thinner, I think with the hope that the blood clot won't grow larger between now and Monday morning.  Dr. Porisch will perform a heart catheterization on Chrissie first thing Monday morning, with hopes of fixing the problem(s).  Dr. Porisch wants her "A Team" in the heart cath lab with her, so she has set Chrissie up for the cath lab for first thing Monday morning.  I know there is high risk right now because if the clot gets bigger, Chrissie could die, and if the Heparin blood thinner gets her blood too thin, causing more bleeding in her lungs, Chrissie could die.

It's a tough situation, and, as I said, I don't even really know what all of this means or even what the official diagnoses are of the CTA.  I do know that Chrissie is in desperate need of your prayers.  Her life is once again on the line, and I've seen your prayers pull her through time and time again as God has showered His grace and mercy and mighty healing hand on Chrissie when you petitioned Him to do so.

Before today's diagnoses, my sister had suggested that April 19 (marking the one month anniversary of Chrissie's admission to the hospital) be a day or intense prayer and fasting for Chrissie. I propose that we set aside this Monday, April 17, which will be Chrissie's 29th day in PICU at Methodist Children's Hospital.  Would you consider making this a day of fasting and prayer for miraculous and total healing for Chrissie?  Maybe we should claim it as another Miracle Monday or Mighty Monday or something like that.  Why don't y'all leave me a comment to let me know what you want to call this Monday? 

In the meantime, please be praying for Chrissie to survive yet another challenge.  Satan is sure working hard to prevent this precious child of God from becoming a living testimony of God's miracles.  But, Romans 8:28 reminds us of God's promise:  "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."  God will use these challenges set before us for good.  Thank you for praying!

To God be all the glory. He is mighty to save.  Keep praying...


More prayer

Chrissie will go for a CT Angiogram of her heart and chest today. This will be her first time to leave PICU in 27 days, except for visits to the OR. She will go to radiology for this test, and she'll be moved to the CT machine. She'll be removed from the vent and bagged during her procedure. Pray that all goes smoothly without any complications, pray for protection from infection and germ exposure, pray that the test will be done with precision and accuracy and that if there is anything wrong that needs to be identified, that it will show up boldly during the testing. Thanks!

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

Vent and lung thoughts

Chrissie is back to the transitional mode on the ventilator, which is what they used when she came off the oscillator. It's the only way right now to ensure that her lungs don't rupture. They're telling me what a challenge Chrissie is and how puzzling she is. Comments made about how she's shown them from Day 1 that she's a princess who needs sopecial treatment, and she will be anything but typical!

They may do a CT scan of Chrissie's chest today to check for any possible obstructions to rule that out as a factor in her respiratory issues, although they don't think that's the case since they didn't see any obstructions on her bronch.

Chrissie has a low grade fever of 100.2 and her heart rate is increased at 122 along with increased blood pressure of 117 over 61.

Yep, Chrissie is anything but typical, and word around here is how she's making everyone scratch their heads. I think Chrissie is trying to make sure that god receives all of the glory for her health and recovery. She just might be trying to make sure the doctors don't get the opportunity to claim that they're the ones responsible for something that God has done.

To God be all the glory. He is mighty to save. Keep praying...

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