The Teen and I were heading out the door this morning, into a cool, dreary day, with routine school and work plans, and no more worries than a lack of preferred teen breakfast food in the house, when Sickle Cell Disease reared its very nasty head.
One minute The Teen is taking some ibuprofen for a mild back ache, and the next minute, she’s bawling and shaking in severe pain, unrelieved even by the prescription medications we have for it at home. The crying was an alarm sign in itself, because she’s pretty stoic about pain levels that would knock most people to their knees, and she is not a cryer.
I’d already taken a few meh outfit pics inside due to the bad weather, but quickly replaced tights and heels with the necessary old jeans and sneakers needed for a long day at the hospital, and then went straight to the ER with The Teen. Who’s had an awful, awful day, and was admitted.
|From left to right: The Graduate Student in Costume Construction, me (heh in the same sweater), and The Teen|
After 10 hours there, Dear Hubby told me “to go home and do something fun.” I think he meant take a nap, but no way, since I’m staying the night with The Teen, and no way I sleep in a hospital. Not unless I’m the one getting the good IV drugs ;P
Why do I talk about The Teen’s Sickle Cell Disease (SCD) on my professional blog? Because I want to raise awareness of it. Many of my virtual friends and colleagues have told me they don’t know anyone with SCD, a genetic blood disorder that causes red blood cells to become hard and banana-shaped.
The excruciating pain associated with the disease is caused by those sticky blood cells becoming stuck in small blood vessels. When this happens repeatedly, it often causes other severe life-threatening health issues. The Teen is especially prone to Acute Lung Syndrome, which makes pneumonia look like a house kitten beside a mother tiger.
|One of my fave pics of The Teen and me.|
The most uninformed questions about SCD we get asked the most: is it contagious? is it blood borne? can I catch it from drinking after someone that has it? Just no, no, and no. That’s where the genetic disorder part comes in. (Getting off my soapbox now.)
What’s the worst part about loving someone with SCD? Watching them suffer horribly, and not being able to do much of anything about it except get the medical staff, hold back hair, and change head cloths. All the time hoping it’s not something else insidious starting as a pain event, like Acute Lung Syndrome or a stroke.
At least the sweater, which I had dug out of my winter clothes, was a great choice for freezing emergency rooms. Maybe not so much the big ol’ pile o’ pearls with ratty looking sneakers. Late in the day I finally went to the rest room, saw myself in the mirror, and thought, “A bit over the top on top for the hospital, aren’t you, lady?”
Okay, so I just had a little fun playing with Picasa, trying to get the brooch to show up better, and came up with this pic, which is my fave of me ever. And the color red, which can represent a vitalizing life force, is for everyone fighting chronic illness and their families.
Serious non-style question here. What’s the best way you keep your head together when you’re in the hospital, caring for someone you love?
P.S. For those of you wondering the heck why anybody would put up a blog post when their child is in the hospital, it’s because it’s the only thing I have any control over today. And I’m going back after a hot shower, a meal not from a vending machine, and packing my pillow. I wish I could sneak The Corginator into the ward. She’d be great therapy for everyone.
P.P.S. Yes, I’m super grateful to have a Dear Hubby with a medical background to spell me during long hospital stays, too. I’m blessed.
P.P.P.S. I’m adding this on Friday afternoon, and thanking of you for your kind thoughts. It looks like The Teen is going to be hospitalized for at least a few more days. This is by a long shot the worst pain crises she can recall. Her wonderful treating physician, a specialist in sickle cell, as described the excruciating knee pain she’s experiencing as an infarction of a joint. She’s also keeping an eye out for the development of pneumonia or Acute Chest Syndrome, which can happen pretty quickly when you can’t walk much and your body is being pumped full of necessary fluids.