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Sunday, June 10, 2012

MOVED AND SETTLED...DAY 9 IN ICU...DAY +25

JUNE 9, 2012 (1:30AM)

WHAT A DAY!!!  Most of you know Andrew was transported to the new Lurie's Children's Hospital downtown Chicago, Saturday afternoon.  Andrew's planned move time Saturday was scheduled at 2pm.  The hospital actually started moving around 6am.  Our friend Connor who was on 4 west, the hem/oncology ward, was one of the first to move and actually was the first patient into Children's.  Way to go Connor.
***NOTE: PLEASE PRAY FOR CONNOR THAT HE WILL START ENGRAFTING HIS DONOR BONE MARROW SOON.  ALSO, PRAY FOR THE PAIN CAUSED BY SIDE EFFECTS FROM PRE TRANSPLANT CHEMO, WOULD BE MANAGED PROPERLY.  THANKS.


Like most severely critical kids in the icu, Andrew's move was toward the end of the Children's move.  Andrew's move was not an easy one.  The health team needed to sedate him more and actually "paralyze" him with medicine so he would not feel all the jostling of the move.  The health team disconnected Andrew from his dialysis machine and observed to see if his blood pressure would be effected.  Next, the team moved Andrew to the ambulance stretcher and observed to see how he would react.  There was a few fluctuations in his oxygen saturation and blood pressure, but for the most part he was stable.  It was amazing how efficient the team was getting Andrew ready, it was really impressive.  Since Andrew's case was so critical, an attending, Dr. Goodman, rode with Andrew on the ambulance along with 3 other nurses.  By the time Andrew left, there were only 6 or so patients left at Children's.   I rode shotgun and saw how Fullerton was closed from the hospital to Lake Shore Drive and how relatively fast we got to the hospital.

We got to Lurie's and there, waited a team to guide us to the 16th floor icu.  Our room is nice and much bigger than our accommodations at the old Children's.  We have a great northeast view of the Lake.  It took an army of Doctors and Nurses to get Andrew settled from the stretcher to the bed and ultimately settled.  I felt so helpless and sad seeing the limp body of Andrew being manipulated by so many people.
The awesome receiving team at Lurie's.  It took an army to get Andrew settled and stable.  Andrew's Army;-)
There was a really scary moment as they settled Andrew in his bed.  Soon after transferring him to the hospital bed, his oxygen saturation started to drop drastically!  Normal saturation range is above 90, but Andrew's tanked to 50.  They asked for the "crash" cart just in case they needed to resuscitate  him.  I was just outside the room observing and praying a silent prayer for a quick return to normal saturations and thank God, the saturation started to climb fast!  Pheeeeew!  Andrew was observed a bit then was sent to get a c.t. scan of his head to see if there was any bacterial infection going on.  After returning, Andrew was reconnected to the CRT machine, dialysis, and the doctors watched closely to see if it would be a success.  The blood pressure remained steady and the rest is history.  We were also blessed to have Heather as our nurse!  She was the receiving nurse at Lurie's.  Heather has 16 year of picu experience at Children's and came on her off days, this past Thursday and Friday to care for Andrew!  She constantly reminded me to eat and sleep and reminded several times from Lurie's to eat and sleep before the big move.  

Andrew is still a very sick person.  His numbers today were slightly worse than yesterday and his chest x-ray showed more fluid in his chest.  He has slight skin rash, which was biopsied and was confirmed as gvhd.  Andrew's liver bilirubin level went from 2.6 to 4.6 which could attributed to medicine toxicity levels and gvhd.  If you don't remember what GVHD, Graft-versus-host disease (GVHD) is a complication that can occur after a stem cell or bone marrow transplant in which the newly transplanted material attacks the transplant recipient's body.  GVHD manifests itself with issues in the gut from the mouth to the bowels, liver problems, skin rashes, mucositis, among other things.  
Andrew's dialysis will be increased to remove more fluid.  The fluid removal is the key to clearing up  many of his infirmities.  He remain stable and has worsened so to speak.  He was a true champ today as he made the big move.  

Children's Memorial, YOU WILL BE MISSED!
This is where Andrew first started his first chemo treatment in March of 2009

Today was a physically and emotionally draining day.  Although Andrew's move was not until the afternoon, I got up at 5am.  I took a stroll outside to see the ambulances all lined up and ready to move 200 patients.  After I found 4 west was moved already, I took a final nostalgic walk around the floor Andrew and I spent many of day the past three years.  I snapped the above picture, because 488 bed 2 was the first room Andrew to start his chemo.  I can remember clear as day the moment before Andrew was given his first dose of chemo and the words I will never forget uttered by Andrew, "Dad, I am scared."  I was very emotional having a potpourri of emotions as we drove out of the hospital for the last time.  I must have shed more than one tear.

If the walls of old Children's could speak, they would speak of the dedication of healthcare providers for over 130 years at this storied institution.  They would speak of a scared 13 year old who was diagnosed with leukemia in March of 2009 and to see this young man grow into the courageous fighter he is today.  They would speak of the tears, sadness, fear, smiles exhibited by Andrew's parents.  The walls would speak of young people's lives cut short at such young ages.  But they would also speak of the legacy these kids left.  A legacy of hope, bravery and courage.  They would speak of all the nurses, doctors and staff that did the "little things" so patients and patient's families could be at ease or have a modicum of comfort in a unbelievably stressful environment.  They would speak of:  Where Kids Come First.  (Children's trademarked words)


As I said Goodbye to Children's and walked out of the building, I walked over the famous train tracks which guided patients and parents to their destinations.  But the rail road doesn't end, it just goes to another station and that station we call Lurie's Children's Hospital.  


Thanks for all your prayers today!  They were heard by our great God and answered.  

PLEASE SPECIFICALLY PRAY FOR:

-THE FLUID REMOVAL WOULD GO WELL AND THAT ALL THE ACCESS FLUID WOULD BE REMOVED IMMEDIATELY, SO ANDREW COULD START BREATHING ON HIS OWN AND ALLEVIATE WHAT IS GOING ON IN HIS LUNG, KIDNEYS AND LIVER.

-PRAY FOR MINIMAL GVHD AT BEST.

-PRAY THAT ANDREW WHILE SEDATED WOULD BE HAVING WONDERFUL DREAMS.  DREAMS WHERE GOD IS PART OF THEM.  PRAY THAT ANDREW WOULD BE AT EASE IN HIS SEDATED STATE.  PRAY THAT HE WOULD BE ASSURED THAT HE WILL BEAT ALL THESE AILMENTS.

-PRAY FOR JENNIFER AND I .  MY PARENTS LEFT, SINCE THEY REALLY COULDN'T DO ANYTHING FOR ANDREW WHILE HE IS SEDATED AND INTUBATED, AND JENNIFER AND I WILL BE CONTINUING TO SWITCH OFF AT THE HOSPITAL.  PRAY FOR PHYSICAL AND MENTAL STRENGTH AS CONTINUE TO CARE FOR OUR SON.  
PRAY ALSO FOR YUN, ANDREW'S MOTHER, WHO IS TRYING TO JUGGLE WORK AND TRYING TO BE WITH ANDREW AS MUCH AS POSSIBLE.

UPDATE:  SUNDAY JUNE 10TH (11:10AM)
Andrew remains stable and overall he is looking better.  The dialysis fluid removal has been increased and his blood pressure remains steady.  His chest x-ray shows improvement, but Andrew's liver function level has elevated for a second day.  They will check his levels again tomorrow to determine whether he needs an ultrasound and to see if his meds need to be changed.  
Dr. Duerst says he remains very sick.  The more organs that are effected the harder it is to recover and Andrew has two major organs that are not well:  The lungs and Kidneys, not to mention the liver.  
***Please continue to pray for the fluid to be removed expeditiously, so he can ween off his ventilator and that his liver numbers would go back to normal levels.  



Thanks everyone!  Until next time!

Joe xoxoxo
General in Andrew's Army!


6 comments:

  1. Hi Joe, those train tracks on the floor bring a flood of memories and tears. We pray for you guys every night and I pray that your story would be as powerful a story for God's glory as Tyler's is to me. Thank you so much for sharing.. Peace to you.

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  2. Joe -- a beautiful post today. I am so glad to hear to hear the move went smoothly! Phew! I'm sure you have many mixed emotions about CMH. I recently read a blog from a woman that lost her daughter to a brain tumor. She also wrote a beautiful piece about CMH.
    http://www.chicagonow.com/mary-tyler-mom/2012/06/rip-childrens-memorial-hospital-1882-2012/
    The building my sister was in at NMH was torn down and now the new Prentice hospital stands there. I thought of that as I was admitted there for 4 days in September 2010. I spent 203 days walking those halls in 1993-94!
    I will continue to pray for Andrew's numbers going UP! Take care Joe.

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  3. Dearest Joe and Jennifer,
    Terrific info today -- and I'm so glad to have checked in this afternoon as well. Thank you God that the big move is complete. Andrew's strength, triumphs (one by one), and kidneys.lungs.liver are prayed for at the top of each hour by our family, friends and neighbors. You two are outstanding, bu please eat and sleep. We love you.
    LynnFrankLaurenKendall

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  4. moving post joe. thanks for taking the time to share. blessings and protection for Andrew and the rest of the family.

    Peter

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