Up at 4am by my crazy little girl, "Moooooommmmm", she wakes me up crying, "I need lotion on my body, I'm itchy!" Oh no! Is she having a reaction to the NEWEST drug she's on? Since she can't tell me where to put the lotion specifically, she just demands I cover her entire body in a layer! I'm noticing that she is barely able to swallow as well. "Lacy, are you feeling okay?" Her hands and feet are hot...
In the strange world of Lacy, she can't localize most pain so I do my best to look around, listen to her delicate little world and hope I can figure out what's going on. Try explaining THAT to the ER Doc at 3am... "well, I can't tell you WHAT is goin' on, but something is wrong... um, no she's not really telling us that anything hurts, she's just not her USUAL self." (As Lacy is trying to tap dance for the nurses in the room!) Yeah, they totally eat that up. I'm getting my t-shirt that says "Bat-Shit Crazy" out of the dryer right now, just in case we have to go to the hospital. Um, Munchhausen by proxy, party of one! (Welcome to my world of CCHS, folks!)
"I just don't feel good", she says while bouncing on the bed and explaining to me how she's "pretty sure" she was "gotten by the Junk Monster" earlier this evening.
The Junk Monster refers to the time's she is "junky": a very technical respiratory description of the way her lungs sound because she has so much "junk" in her lungs and is coughing it all up.
In a normal world, the inability to swallow is of utmost concern. My kid has another airway just below that region, so I know we aren't at eminent danger yet. I did notice that she was sitting there not breathing for a few seconds and her saturation was dropping into the 80's.
"Hey Lacy, can you start breathing again please?" I ask in the same tone I'd ask her to pick something up off of the floor...
"Why?" she asks while taking a few breaths.
Her oxygen saturation starts to rise back into the 90's.
Some folks have suggested that adding a baby into the crazy mix is going to be hard. Randy and I scoff at the idea. "We are going to be raising a nose-breather... no vent, no crazy meds, no oxygen tanks, no suction machine, no heart monitor, the kid actually REMEMBERS to breathe on a constant basis... puhleeze... after a Lacy-style-learning-curve? Game on!
Thursday, March 05, 2009
Subscribe to:
Post Comments (Atom)
1 comment:
Hello Jo and Lacy,
I just wanted to tell you how much I admire you as amom to Lacy. I also wanted to let you know that went Stefanie was 4 months old, and had been home only a month and a half from the hospital after we found out she had CCHS, I because pregnant with her little brother. At that moment I was scared out of my mind. My first fear was that the baby would also have CCHS because Stefanie was not diagnosed at birth because she is a very mild 20/25, and I thought perhaps one of us had the gene and didnt know it. Then my next fear was how out I cope with a child thats on a monitor and on BiPAP and a new baby and only a 13 month difference between the two. Let me tell you after you have gone through a child with CCHS the rest is truly a piece of cake.
I wish you a healthy pregnancy and easy delivery.
All the best to you and your family,
Michelle and Stefanie
Post a Comment