I like to think this blog is honest. To keep with that, here is the email I sent to Eloise's surgeon today, which is a pretty good representation of what my daily life is actually like:
"Hello, Dr. Downey! So Eloise's reflux has been so bad lately, worse than its ever been. She used to sleep from 7-7 at night, and lately she's been up at 5 am, cranky and miserable. She has what I call 'spit fits,' when she clearly has a wad of secretions stuck somewhere and she is fighting to get it out. Her whole body tenses, she breaks out in sweat, and she tries to heave it out. Sometimes it comes out her nose. For the past six-ish months, she has had maybe 3-4 spit fits a day. But since her dilation & g-tube change on August 4, she has had 1-2 an hour of her waking day.
I've tried to catch a spit fit on my phone to send you, but I can't ever just sit there and film it while she's having one :(. I've been wracking my brain over this, and the only changes I can tell that could contribute to this is teething and the intrastar g-tube.
You mentioned that the intrastar g-tube is a polarizing thing for parents - and I hate it. I wanted to give it another week to try it out, but after looking at Eloise this morning, I want the old Mickey g-tube. I think perhaps the intrastar may be better at emptying the stomach via the pylorus, but I think the mickey is better at helping her quickly drain sucretions. If Eloise does have a hiatal hernia, its not like she will be digesting her food orally for the next year anyway. So I want to help her be more comfortable in the here and now.
Do you think we could keep our August 22 appointment? Or when do you think we could do that? Any ideas on how I can help with this horrible reflux? I'm pretty burned out with it, and its the first time since she was born I've felt that way - yikes!
Thanks for everything, I look forward to hearing from you...
Best as always,