In memory of Shane Torrence (1/28/93 - 9/11/99)
A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care?

Sunday, April 6, 2014

Shane's Story - Chaper 4

 Polaroids taken by Shane's nurse upon arrival at the children's hospital.

Our son wasn't put in the Neonatal Intensive Care Unit (NICU) with the other babies because ECMO (still very new in 1993) was handled only in the PICU.   So he was never in a nursery with other children, he was alone (at the delivering hospital) or with the older children since Day 1.   No "normal" baby anything for our little boy.

The first time I walked into the Pediatric Intensive Care Unit (PICU) I was overwhelmed. No one told me what to expect.  It was constructed of 2 large rooms with beds lined up against the walls. Sick children were everywhere. Children awake and playing video games, children in comas, children on life support.  The beds were just feet away from each other with only curtains between them and those curtains only drawn for procedures.   Otherwise parents sat in chairs on each side of the beds or cribs, bumping into the parents sitting at the bed of another child next to them.

Among these children was Shane. He looked even smaller than the night before. He had IVs in every limb and the ventilator took every breath for him. He was sedated and paralyzed from the medications. Yet despite all the medical equipment, he was the most beautiful baby I'd ever seen (of course I'm a little prejudiced, like all mothers). The oscillating ventilator was giving him 420 breaths a minute to keep his lungs from collapsing and a heart and lung bypass (E.C.M.O.) machine stood beside him as a precaution in the event that his heart and lungs quit.

The surgeon came and introduced himself as Dr. Caffy* and scheduled surgery for that Monday, 2 days later. I had no idea of what he was explaining to me, I just agreed to everything and put my son's life into his and God's hands.

I wasn't allowed to stay at the hospital with my son, there was no housing for parents.   We were lucky enough to get a room at the local Ronald McDonald House.  It was such a huge blessing to us to be able to get in as rooms weren't always available to families in the PICU or NICU.  Cancer patients always got rooms first as the RMcD House was invented for them.   It was so wonderful to have a place to stay that wasn't expensive like a hotel room.  Parents still have to pay to stay at the House but it's minimal and not required.   I don't know what we would've done without that amazing House.
That night we settled in and Jeremy told me that his brother, James, had found out that Jeremy's application for a job at the local lumber yard had been accepted. After four months, Jeremy had a job. It solved some of our money problems but they didn't seem to matter quite so much any more. Our church and other churches who had never met us began to take up collections to help us get by. My faith in humanity was beginning to grow.  I prayed harder than I've ever prayed in my life that night. I prayed for God to watch over Shane and most importantly I gave Shane to God, to do His will, whatever that might be. 

That weekend we started the ritual of getting up, going to the hospital early to be there when the doctors were doing rounds and staying until we were kicked out at the shift change.  Eating dinner and then back to the hospital.  Then back to the Ronald McDonald House to try to sleep.  Pumping breast milk every few hours throughout.  Adrenaline and worry kept us going mostly.
(*Not real name)

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