Memorial Open House

Beth and I would like to welcome you all to our home for a Memorial Open House this Saturday, April 13th from 1:00pm - 3:00pm.  We would like to gather all those who offered prayers and support to help us celebrate Shawn's fighting spirit and the inspiration that was his life.  

Shawn's Memorial Open House

15502 Farmland Ct

Noblesville, IN 46060

Saturday 

April 13, 2013

1:00 - 3:00 PM

Your fight is over. Rest now my little warrior.

About 2:30am this morning Shawn started bleeding out of his wound from last night's surgery.  The nurses were unable to keep up with the blood and fluid losses and his little heart couldn't take it anymore.  At 4:00am they had exhausted all options... the nurses wrapped him up, placed him in our arms, pulled his breathing tube, and he passed away peacefully a few minutes later.  He was only with us for a short while but in that time he has shown me the strength of a million lifetimes.  He has inspired  me and enlightened me to the greatness of the human spirit.  He was taken from us far too early but we are grateful for the little time we did have with him.

I'd like to give a big thank you to the medical staff at University and Riley Hospitals for doing everything they could to give us this precious time with our son.  And thanks to all of you whose thoughts and prayers lifted him up and proved that miracles do happen. 

You fought a good fight but now your fight is over.  Rest now, my little warrior.  Rest now in peace.  We love you. 

Out of Surgery

We just spoke with the surgeon and Shawn is out of surgery and back in the ICU.  The good news is that he made it but the bad news is that just about his entire colon was gray dead tissue and had to be removed as well as a small section of his small intestine.  They also bruised a section of his liver during the surgery which ruptured and bled.  They had a lot of trouble with bleeding with all the heart meds he is on hurting his clotting ability so he is getting a heavy dose of blood transfusion.  His belly was left open since the surgeon will need to go back in in 24 to 48 hours to ensure the diseased tissue did not spread further and to clean up from the excess bleeding.  The next 24 hours will be very scary as they try to stabilize Shawn from this surgery coupled with the heart issues.

The surgeon said that if and when everything else gets sorted out with his heart he will be able to make Shawn digestive system work properly without a colon.  This procedure should have a minimal impact  on his life.

This will have a major affect on his surgical plan and will likely push everything back regarding his heart until this mess is sorted out and stable.

I hope this makes sense...... I'm an emotional wreck right now.

Emergent Abdominal Surgery

Just about right after I posted today, Shawn started a major slide for the worse.  His abdomen started swelling, his sats went all over the place, and his blood pressure plummeted.  The doctors believed he may have caught an infection.  Beth and I immediately feared the worse.  They started an aggressive antibiotic treatment but it was unlikely that his body would be able to sustain long enough for the treatment to work.  They ordered an x-ray of his belly and it showed a possible hole in his intestine that is leaking fluid into his abdomen wall.  This fluid is causing swelling and pressure to build.  This pressure is making it impossible for Shawn's ventilator to provide adequate support to his body and heart.  This news was devastating.  For Shawn to make it this far...

Our little boy, Shawn, is currently in the operating room as I type this with trembling hands.  At this point it was our only option for the surgeons to open his tummy and investigate.  If they see dead portions of intestines they will remove and patch them.  At the very least they will try and reduce some of the pressures he is experiencing and give his ventilator a fighting chance to allow him more time for the antibiotics to take affect.

Your prayers are needing now more than ever as our little heart warrior is fighting another battle against an unknown enemy.

Day 12 and a little of Day 13 too

His arrhythmia persisted all yesterday.  Further down on his dopamine and fentanyl as well.  Pretty quiet day which all changed early this morning.  Around 5:00am this morning he was having some major fits with low heart rates in the 100s and dropping blood pressure.  His lactates in his blood were also creeping up which is a sign his heart muscles were under stress.  He lost his right hand IV which was giving him the prostagladin medication to keep his ductus open so he was not getting this medication for two minutes which may have caused the issues.  After about 2 or 3 hours (felt like an eternity to Beth and I) he came out of it, numbers came up and stabilized, and he is much better now.  Sats, heart rate, and blood pressure right where they want it.  Lactates in his blood also normalized.  They ran another central line this morning, this one in his femoral artery, which should be a more permanent access line to administer some of his medications.

Also this morning he decided to come out of his arrythmia and is now beating normally at a rate of 153 beats per minute!

Shawn's Snoedel hoodie when they turn the lights on!  Thanks Aunt Erica!