I work on the Blood and Marrow Transplant Unit at Cincinnati Children's Hospital Medical Center. I don't think I'll ever get used to seeing sick kiddos - precious ones with bald heads and tubes coming from their chests and noses, tethered to poles with pumps pushing toxic meds through their little bodies. It's a punch in the gut when you see them trying to carve out a childhood among the monotonous day-to-day routines of being a patient.
But remarkably, they still laugh and ride Big Wheels in the hallways and paint pictures and act silly. Just today one of our little guys got to walk outside for the first time in months. And it was like a party in the hallways seeing him off to the elevator so he could go "see the sky". Sigh.
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| A tidy stack of quilts on the linen cart. |
I'm a quilter, so every time I see a quilt making a statement or holding a place of honor in someone's life or space, I notice it. On our unit, as many other units do, we get a linen cart everyday that's filled with sheets, blankets, gowns, bed pads and scrubs. It also carries a neatly folded, tidy little stack of handmade quilts.
Most of them are made with hideous Christmas and cheesy novelty prints, but some are sweet and simple and cute. They're not very big - just enough to cover a toddler - but big enough to snuggle for even the twentysomethings that frequent our unit. The quilts are donated to the hospital through the hospital's sewing room (yes - we have our own sewing room!) and are made by volunteers.
I gotta share this story with you because it's the perfect illustration for why quilts matter.
Awhile back, we had a patient named Hannah*. She was a fiesty, blond haired and blue eyed four year old little firecracker. She had a complicated family situation - she was born to a teen mom and was being raised by her grandparents. Hannah was diagnosed with a rare blood disease that literally makes the body attack itself, causing damage to large organs and the nervous system.
As Hannah's disease progressed and the longer she stayed in the BMT, she became increasingly more anxious about the everyday routines of being a patient. Vital signs (blood pressure, temperature, weight and oxygen saturation levels) and daily rounds of the medical team became a time of panic for her, a time that she became non-compliant and combative. Getting her vital signs was nearly impossible and physicians and nurses couldn't get an adequate assessment of her. Over the course of about 4 months, it got to the point where she would scream if anyone even knocked on the door.
One of the Patient Care Assistants, Tracey, was one of the only caregivers that could even get in the room with out Hannah having a meltdown. Tracey had managed to find out how to approach Hannah and even befriended her a little. One of the responsibilities of the PCAs is to change the patient's linens everyday, which includes bringing them a clean quilt from the cart. Everyday, Tracey would bring Hannah a quilt and Hannah would give her opinion of the quilt, telling Tracey it was either ugly or pretty. When Hannah became very ill and was in a lot of pain, Tracey changed her strategy to picking out the prettiest quilt in the pile for her, making sure Hannah knew that she got first pick on the entire unit. Hannah thought this was the best thing ever and it very quickly became their daily routine. Tracey started negotiating pretty quilts for good behavior when Hannah needed to get her vitals taken and get examined by the medical team. It was the only tactic that worked. A team of behavioral therapists couldn't get Hannah to comply like a pretty quilt and a clever PCA could.
Hannah's conditioned worsened and she was eventually transferred to the PICU. Problem - the PICU didn't have quilts on their linen cart and Tracey wasn't there to bring Hannah her daily dose of quilty goodness. So Tracey, everyday, would nab a quilt from the BMT cart and take it over to the PICU and lay it in Hannah's bed. And even when Tracey wasn't there to do it, someone else would take a quilt over there for her.
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| A quilt waiting for a new patient on the BMT. |
Hannah passed away in the spring. She was a very sick little girl who suffered a long and painful death. Even though I have strong faith in God's plan for everyone, I sometimes question these outcomes. I question why that little girl was turned inside out and had to suffer. I just don't get it.
But what I
do know is that a quilt, made with love and delivered daily with hands that care, was a bright spot in the life of a sick little girl. A quilt made a garbage dump of a situation not as stinky. A quilt got a frightened child to feel safe and warm and calm. A quilt mattered to her.
And that's only one of the quilt stories on our unit.
*Not her real name.