The more I learn about Cornelia de Lange Syndrome, the more I realize the health issues keep on coming.
We're reminded of that again this morning after Hope spat up another batch of old blood. It's becoming a weekly ritual. Last Friday, we were at the movies. My mother and sister babysat. Mo ducked out, placed the obligatory call for reassurance and heard: "Well, she soaked her shirt and bed with what looks like blood and bile ... But she seemed really happy afterward."
She's had about five episodes, each about a week apart, since an endoscopy in late May showed no major damage to her esophagus from reflux. She underwent that procedure -- a scope snaked down her throat -- because we found a few drops of old blood. These are geysers.
The mercurial Dr. Spitenup is on the case. He examined the blood, pontificated and analyzed before arriving at his diagnosis: Hey, it happens.
For months, Hope has moved toward sitting on her own, crunching her abdominal muscles like Jack Lalanne. She's not quite there, but Spitenup thinks the pressure is exacerbating her hialtal hernia, a mostly benign condition in which her stomach pushes into her esophagus. He doesn't think it's a major issue unless it happens more frequently.
Our answer: Uh-unh.
We're pressing Spitenup yet again for better answers. It's taken us months to grow accustomed to his strange ways. We've come to respect him because, so far, he's been spot on -- even if his bedside manner is straight out of 20 Questions or a police interrogation.
But this is different. If he can't make this stop, pronto, we're going elsewhere. Among all of life's nuisances, spitting up old blood doesn't strike us as something to get used to or shrug off.
4 comments:
Oh dear, I hope you guys get some answers soon, and are able to put an end to the bleeding. It doesn't sound normal to me either. Getting a second opinion couldn't hurt.
Ben used to spit up old blood before his surgery, even with his reflux meds. We've not seen blood since, not even when we "burp" him through his g-tube.
Very cute photos, by the way!
Ben has abs of steel too - if you hold his legs, he can sit all the way up from a lying down position without using his arms at all!
Yikes! Not something I'd want to be routine. Hang in there guys! Glad to hear you're getting out and about - wow seeing a movie! That's great.
Keep us posted!
UURRGGHH! i hope that you find out what is going on soon!! lots of prayers your way for that!
LOVE THOSE PICTURES!! I'm sure i've made this remark before.. but can she BE any CUTER??????
I haven't ever met Dr Spitenup, obviously, but he sounds like he needs a session with a Dr. Freud type. Not much in the way of bedside manner::)) or even helpful information. Must be very frustrating. Here's to a new gastro guy!
She's sure a charmer
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