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Thursday, June 7, 2012

DAY SIX IN ICU...DAY +22 POST TRANSPLANT...





*** THIS POST IS THE EXACT SAME AS THE ONE BEFORE, BUT I ADDED SOME BECAUSE OF SOME SPECIAL FRIENDS THAT STOPPED BY TODAY!

Sorry for not updating sooner, but I hope you understand the controlled chaos going on in our lives at the moment.  I am trying to get updates to you as soon as I can and one issue with BlogSpot is that when I post there is substantial delay in getting you the post if you have submitted your email for automatic notification.

Anyway,  Andrew remains in stable condition and is still very sick.  Andrew is not going backwards and getting worse.  His chest x-rays seem to be looking better everyday, indicative of his pneumonia getting better.  Andrew is still on dialysis (crt) removing the excess fluid which is exasperating issues with his lung, kidneys and liver.  It's a delicate balancing act of removing enough fluid, but not too much or his blood pressure will drop.  The doctors isolated a virus in cultures called HHV6, which causes issues like pneumonia and kidney issues.  The doctors think he still has a degree of the VOD I eluded to, which causes blockage in the small veins in the,which they are treating with specific antibiotics.  His bilirubin level rose a bit yesterday, but the doctors are concluding a an anti rejection drug called cyclosporin is the culprit and they have adjusted the dosage which resulted in a lower level today.  The level remains outside of normal ranges.  As I have mentioned Andrew's blood pressure has a tendency to drop to low levels when he is agitated, which can be caused by suctioning of his ventilator, movement of any kind and other manipulation.  The pressure until yesterday would stay low and would take sometime to go up with the help of dopamine.  Currently, when agitated, his pressure would go low, but now they are recovering much quicker without the help of meds.

Saturday is the big move to the new hospital downtown.  We thought a few weeks ago we would have a easy ride to the new hospital coming from 4 west, instead of the icu.  Most of you saw the picture of how many lines and machines are going into and out of his body and I am wondering how the heck they will transport him.  I was especially pensive knowing Andrew is very sensitive to movement resulting in the lowering of his bp and how the drive on Chicago roads and it's bumps would effect him.  Although Fullerton will be closed from the hospital to Lake Shore Drive and Lake Shore Drive closed to Chicago Ave, it is inevitable the transport will experience bumps and potholes.  The stem cell team and icu team have decided to paralyze Andrew for the ride.  Sounds menacing, but they will sedate him enough first and then paralyze him where he will not react to anything.  He will be totally relying on life support on his ride to new Children's.  I ask you pray for protection on the ride to the new Children's.  Since Andrew is in such critical condition, a fellow or an attending will be riding with him in the ambulance.
The hospital has been practicing this move for years and I am confident things will go smoothly, but nonetheless pray for the move.

The Best Step Mom in the World
Margot!

On a ligher note, our 8th grader is now a high schooler!  Emily graduated last night and we were blessed to have my parents from Florida come up and her Uncle Albert, Auntie Jennifer and two year old cousin Margot!  We enjoyed a nice dinner afterwards and I really noticed Emily was enjoying her time with all of us!
The family minus Auntie Jennifer and Margot (nap time)
The celebration would not have been possible without the help of my friend and pastor Michael Chang.  I have my close friends Dan and Don, but the first person I thought of to be with Andrew yesterday during the graduation was Pastor Michael.  He has been our family's pastor for the past 15 years!  Andrew came to the church when he was 2 and Pastor Michael has loved him since.  Andrew loves massages when he is at the hospital and he won't let anyone touch him but a select few and one happens to be Pastor Mike!  Andrew has seen him grow into a courageous and brave young man.  Not only has he helped Andrew, but he has been my friend and spiritual model.  He walks the walk so to speak.  He is a man of integrity and godliness.  He has been by my side through the dark days of my separation and divorce and been there every step of the way with Andrew's battle with cancer.  Without friends like Pastor Michael, this journey would be very lonely and downright tough.  Moreover, I think of all the blessings of friends I have of past and present.  I think of all my high school friends I have reconnected with and have supported me and my family through these arduous times.  I think of my two closet friends Don and Dan who are Godly and the most real people I know, especially Dan, who I am extremely close with and cherish the deep, meaningful, honest and open conversations we engage in, many times over a good cigar (my only vice).  I think of friends I have recently met like Lisa and Sean Daley who lost their precious Anna to complications post bone marrow transplant a month ago.   Lisa in her time of grief has been texting me encouragements and notes of how she and others are praying for Andrew and our family.  She has posted prayer requests on Anna's CareBridge site, imploring others to pray specific requests.
And there is Victoria Pena and the Pena Family.  Victoria was Andrew's classmate at Hinsdale Central until she recently moved to Texas.  Andrew has grown close to Victoria since he relapsed.  They have been skyping and texting growing closer as friends.  Victoria has been a  true friend.  Victoria and her mom Kimberly and fellow Central classmate Sheerin just visited Andrew.  The Pena's came straight from the airport to visit Andrew.  And an amazing thing happened.  While Victoria, Kimberly and Sheerin were talking to him, he twitched and his eyes rolled!  I know he was happy they visited.  Come on, when three beautiful women come to visit, you get excited;-) They were what Andrew needed today. Blessings!  ANDREW AND OUR FAMILY ARE TRULY BLESSED!

PRAYER REQUESTS;

-PLEASE CONTINUE TO PRAY FOR HEALING OF ANDREW'S LUNGS, KIDNEYS AND LIVER. 

-PRAY FOR THE VARIOUS DRUGS USED WILL BE EFFECTIVE IN ERADICATING ALL HIS AILMENTS.

-PRAY FOR THE MOVE!  ANDREW WILL HAVE TO COME OFF THE DIALYSIS MACHINE AND MOVED TO A DIFFERENT TYPE OF VENTILATOR FOR TRANSPORT.  ANDREW'S PRE TRANSPORT WILL BE VERY EXTENSIVE.  HE WILL HAVE TO BE STABILIZED AFTER HE GETS OF THE DIALYSIS, MOVED TO A TRANSPORT STRETCHER AND MONITORED TO SEE IF HIS VITALS ARE OK AND READY FOR TRANSPORT. PRAY HE WILL BE STABLE ENOUGH FOR TRANSPLANT!!!

-PRAY THAT ANDREW WILL GET TO THE NEW CHILDREN'S SAFELY AND WITHOUT ANY COMPLICATIONS.  HE IS VERY SICK AND THEY WILL TAKE AS MUCH TIME AS POSSIBLE TO ENSURE HE GETS THERE SAFELYAND THE TEAM OF DOCTORS AND NURSES TRANSPORTING HIM WILL MONITOR HIM WITH THE UTMOST CARE.

Thanks everyone!  This move is critical.  Pray specifically and in faith Andrew will get through this move and crisis!  

XOXOXO,
JOE

1 comment:

  1. Joe -- I have been thinking about "the big move" all week. Wondering how they will transport Andrew (and other ICU/critical patients! Boy am I glad I don't have that job. I will be thinking of Andrew and imagining him being transported safely and smoothly -- as if he is on the wings on angels!

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