Shelby Smiling, Shelby

Shelby’s Last Day

Thursday, April 16, 2008 — It’s a date I will always remember. Fortunately, it doesn’t figure as prominently as it once did.

That morning, my six-year-old daughter, who’d been undergoing treatment for Crohn’s Disease (which turned out to actually be Ulcerative Colitis) woke up with a terrible fever. She was moaning and bumping into walls. We rushed her into the tub to get fever down. Called Pediatric GI answering service. The doctor on call said to go ahead and take her into ER so blood work could be started but probably nothing. Plan on seeing her Pediatric GI after leaving ER.

She walked into the Emergency Room and proceeded to the Pediatric Intensive Care Unit. I was at home with our almost 5-year-old twin boys (their birthday is the April 17th) and David was at hospital with Shelby. He told me they put her to sleep and suddenly, no one was allowed into PICU. There was a patient who needed emergency attention. For a couple of hours, parents called into PICU but denied entrance. Parents paced the hallway, in and out of the PICU waiting room.

The patient who was in crisis — yeah, it was our daughter. She was septic. Veins collapsing. Fever raging. Systems shutting down. Nurses couldn’t get arterial IV inserted. We were told after the fact that Dr. Keegan, who for some strange reason had come onto shift a little early, took the needle from the nurse and was able to insert it first try.

She was now in a coma.

My baby was sleeping.

As soon as our oldest daughter came home from school, I headed to hospital with an overnight bag. David went home to take care of the boys. The hospital gave me a room on the floor near PICU. At the time, I thought they were being extra kind to me. But it was a grieving room.

Shelby with Papa, Shelby

Shelby with Papa

The Bad News

I signed some papers giving consent for all the emergency procedures. And then listened to the doctor looked me in the eyes and softly explain that the chances of Shelby waking up were extremely slim and that I should start thinking about final arrangements.

I was crying. Not sobbing, just tears falling from my cheeks. I remember telling him that I appreciated him so much and that his words must be so hard to say. I thanked him. And then told him that Friday was my son’s birthday. She was NOT dying on their birthday. End of story.

I sat in her little glass enclosed room in PICU. I sang to her. I read to her from one of her Scholastic books that she’d wanted to buy because of the fairy necklace that came with the book set. Crystal, the Snow Fairy. I had brought purple yarn and my crochet hook with me. So I crocheted while I sat. When I left to go to the room on the floor, I laid the start of her blanket on the table so she’d see it when she woke up and would know that Mommy was near.

Then I went to the room and cried. And prayed. I called my father 2 hours away and asked him the worst “favor” anyone could ask — would he help me get her transported to the cemetery where Mom is buried. I couldn’t stand the thought of her being alone in the dark down here. I wanted her near her Granny. I remember kneeling on the floor with my face in the seat of a chair, just crying and praying. And I remember giving it over to God with one request: please don’t let her be alone. Please let my mother be there with her. And I remember a sense of peace. Not happiness, not acceptance just peace.

Shelby's Awake, Shelby

Shelby’s Awake

The morning of the 17th came. I left my room to get a cup of coffee from the nurses’ station on my way to see Shelby. Dr. Keegan was there. I looked at him and said, “Not today”.
Dr. DeVoid, our Pediatric GI was there too. He got up, came to me and said he wanted me to remember one thing. (Note, I was sure he was going to say she would be in a better place and my hand had balled up to punch him in the face — there was NO better place than with me!) He hugged me and said, “Shelby’s ornery.” Yes, yes she is.

Nurses were rushing – so many wires, so many IVs. A cooling blanket bought by Children’s Miracle Network was bringing the fever down.

Shelby Eats An Elephant

I kept telling her that she could eat an elephant. One. Bite. At. A. Time.

And she did.

Monday, April 21 I dreamed. I dreamed she was sitting on a park type bench with my mother and they were braiding clover into crowns and necklaces. Mom looked up at me, then turned Shelby my direction and pointed at me as if to indicate that Shelby was to come to me. It was a beautiful and happy dream.

Tuesday, April 22 Shelby woke up. Transferred to the regular floor on Monday April 28. They told us that she’d lost a lot of creatinin and suffered some brain damage. Nearly every system had tried to shut down. It was going to be a long road to recovery. We’d probably spend a few months in a live-in physical rehab facility.

They gave her a red walker. Then promptly replaced it with a different one — she was going too fast with the red one. She needed to slow down. Physical therapy ordered. She loved the dog therapy visits.

On Saturday, May 3, Dr Birsch came to see me. They were sending her straight home. They could come up with no reason to keep her. And we went home.

Shelby will be 15 this year.

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