So many mums are writing about their shared experiences with GI issues (gastroesophageal reflux disorder or GERD), Candi re Luke, Kristi re Gracie, Victoria re Moriah and others. We all know what a terrible toll it takes on our little loves, how they struggle. The open trach is just another complication with that constant fear of aspiration pneumonia looming when he does throw up. We're just on the other side of another bout. I guess it's a monthly thing for Reu, maybe 4 huge throw ups a day during a bout and keeping him on Pedialite. We are blessed he's a healthy 23lbs so has some reserves to pull him through. (But hey, the lad's still growing!)
It was alarming last weekend though to see blood appearing from his stomach when we bolus fed him. Kristi, pro, was a great support, giving advice on a medication called Carafate which Jason went on a quest to find at the (closed) pharmacy through repeated calls to the paediatrician on call at Children's. But by morning, I'm pleased to say after a night off his feeds, the issue had resolved. It's too frightening when you haven't seen it before, and my empathy goes out to the Swanns as I know they're battling GI issues long and hard, the presence of blood, like ground coffee coming from Reu's stomach which then turned to red blood.
The CHARGE families continue to be an amazing resource for such issues and hey, if it wasn't for Candi and Amy Russo, Reu wouldn't now be tolerating a (modified with a 1/16" drilled hole) Passy Muir Valve and, God willing, I feel we're so close, on the verge of vocalising...
When Reu was born, I know it must still be the same for other families, there was no immediate resouce available and it was only through my b/f Erica's calls in the UK that Yuka was tracked down here and so began the journey with the CHARGE sisterhood to quote Hannah. Don't we need a little crib sheet of sorts to give to new CHARGE parents to be available at Children's hospitals? Even in a huge megalopolis like LA, we were at first in the dark.
3 comments:
Yes, we do need some sort of cheat sheet for new parents. Especially on all the "little" issues that the main site doesn't focus on but seem to be common in most of the kids, like feeding issues etc...
I agree if I had the crib notes from parents and not the big novel they gave me would have helped so much.
Hugs,
Crystal and Eva
ah the joys of the old gi isues i dotn know if you saw kim ls post bout it beign soemwhere in hte nevous system and i must say i agree with her ou rlittle bodies r so out of wack its not funny
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