PICU-ups

  About PICU-ups                                                           

Long Story Short...

 

PICU-ups originated in the hospital bed of a young girl named Kelsea, who had a 1% chance of surviving a rare tumor along her spine.  Her positive attitude was fueled by the kind nurses at the Children's Hospital of Philadelphia (CHOP) and their incredible ability to make her feel happy.  After having spent many days in CHOP's Pediatric Intensive Care Unit (PICU), they would even come into her room and give her a spa day on Sundays!  This made her feel like a princess and brightened her day.

 

After a long battle, Kelsea's doctors were able to save her life and once she regained her strength, she headed off to college in pursue of a career in the medical field.  She decided that she wanted to give back to the PICU floor and help other kids in the hospital feel just a little more comfortable during such hard times.  So she got together with her sister, her mom, and a nurse at CHOP and came up with the idea "PICU-ups," pronounced, "pick you ups."  Sending little PICU-ups or gift packages to kids in the PICU would hopefully pick up their spirits and help them stay positive through rough times.

 

 

The Long Story (written by Karlee Henderson)

 

I was 10 when Kelsea (three years older than me) was rushed to the emergency room with an unbearable pain in her side. A CT scan revealed a tumor along her spine that spanned 8 vertebrae and wrapped around the bottom of her lung. An initial biopsy came back benign. When the surgeons attempted the resection, they noticed a change in the appearance of the tumor and a second biopsy diagnosed a malignant peripheral nerve sheath tumor. My sister had cancer and my life was flipped upside down. She underwent 38 radiation treatments and chemotherapy but it wasn't enough to shrink the tumor. Kelsea's surgeon would not operate on the tumor due to the proximity to her spinal cord, but luckily, there was a neurosurgeon brave enough to tackle it. After 32 hours in the OR in 2006, he and his team were able to remove the tumor and her plastic surgeon stabilized her ribs and spine with a synthetic mesh plate along with rods and pins.

 

But our story doesn't end there. The year following this surgery we spent 236 days in the hospital from complications that arose. I say we because my family was always there with her. My Dad would pick me up after school, we would go straight to the hospital, and had to leave at 9:00pm, when visitors' hours ended. My mom slept on the couch in my sister’s room. The scariest moment for me was when Kelsea went into “pseudo-seizures.” My dad and I were driving home when at 8:46pm my mom called in a panic telling us to turn around and come back to the hospital. When we got to the hospital, my sister was convulsing in her bed with crash carts in her room. My insides felt like they were twisted up in a knot, I couldn’t breath. It turns out that they were “fake” seizures that can occur with high blood pressure.

 

Kelsea’s left lung was weak from radiation and was damaged further when the surgeons scraped the tumor off of the lung. This allowed tunnels of air to develop between her lung and spaces in her chest cavity. So when the hardware wore a hole through her skin, air would leak from her lungs through the air tunnels in her chest cavity and out of her back. Also, when she got pneumonia, the air tunnels provided a direct route to her hardware and eventually to her spinal sac, causing meningitis. Not only was air able to reach her spinal sac, infected spinal fluid leaked back out through the air tunnels and out of her mouth. They tried to plug up her lung by stuffing her latissimus muscle into the cavity that the tumor once occupied and laying the muscle over the hardware to provide cushion, but the tunnels kept forming. Numerous surgical wash outs of Kelsea's hardware did not prevent the infections from reoccurring.  The doctors decided to remove the hardware and see how she would do. However, her spine was still weak and began to collapse; she developed kyphosis and scoliosis. They knew they would have to put the rods back in and that they may eventually need to come out again.

 

My sister’s doctors used their creativity to think up the following plan. They took her fibula (a non weight bearing bone) from her right leg, broke it in 3 places, and laid it along her spine. They then took her saphenous vein from her left leg and used it to supply the bone with blood. Rods and pins were added again, and the latissimus muscle was stuffed further into her chest cavity. This elaborate 24 hour surgery solved her problems. To prevent air tunnels from forming again, the lower half of Kelsea’s lung was plugged up with one-way valves (allowing air and fluid to exit when she coughs, but preventing anything from entering her lower lung). She was the youngest person to ever get these valves installed.

 

All that being said, Kelsea spent a lot of time in the PICU. Her nurses were so great and loved Kelsea because of her positive attitude. They started having “Spa Sundays” for Kelsea. They would fill a standard, yellow barf-bucket with warm soapy water and give her a pedicure. They filed and painted her nails, brought in scented lotions, and pampered her. This made her feel so loved and special. She wanted to be able to do this for other kids in the PICU. The idea started out as caboodle like kits with nail polish and lotions for girls, but we expanded the idea to care packages for kids of all genders and ages in the PICU. My mom came up with the name PICU-ups. It combines the acronym for the Pediatric Intensive Care Unit (PICU) with the phase “pick-me-ups” to explain our purpose; to provide “pick-you-ups” for kids in the PICU. I loved this idea from the start. I could see how the nurses were able to brighten my sister’s sprits with spa day, and to be able to provide that little lift to other kids has been a fulfilling experience.

 

We were asked to be a part of a HGTV mini series “Sandra Lee Celebrates,” where hostess Sandra Lee came to different family’s homes during the holidays. Each family had a unique story with a “be thankful” overtone. We introduced the PICU-ups idea to the HGTV crew who bought the supplies and helped us create packages for girls and boys. We delivered the PICU-ups to the hospital and were lucky enough to be able to personally deliver a package to a little girl named Rose. She was so excited to receive the gift, which she adorably thanked us for in her tiny voice. This story aired on HGTV and can be watched in clips on YouTube. Ever since, I’ve been trying to keep the project going and I hope to give it a foundation in SAAC so that even when I am in medical school, Rowan will be fundraising for this cause and creating the packages. I've experienced the scariest moment of my life at CHOP, but it is that hospital that saved my sister’s life and helped her to stay positive thought the entire experience. I am glad that we’ve been able to give back in some way.