I've been making some updates to the end of my vomit plea post.
But this deserved it's own post:
First of all THANK YOU everyone for all of your suggestions, I'm digesting them all, going to copy many of them and MAKE Kaitlyn's doctors do something!! I've read every single one of them (here and on Stacy's blog too, thank you Stacy for posting my plea on your blog:
Mainly though this post is a huge sense of "relief" I'm feeling tonight. I feel like jumping for joy and elation.
I think I know can better understand why I get so depressed and can't stand feeding Kaitlyn. I mean REALLY can't stand it. I think I may have been serious mental alert-watch myself if it wasn't for my nanny doing the majority of the day-time feeds 4 days a week. There is NO way I could feed her 7 days a week. NO WAY. My husband caught me the other day bawling while sitting feeding Kaitlyn, slumped over, at my wits end. (I don't normally post about this stuff). (oh, and my heart goes out there to all of you readers who have to feed a feeding disorder child every meal every day....This is serious stress for the mother here and worth a whole post on the subject.)
We started K back on Periactin 3 nights ago (so 2 full days of feeling the effects). The first morning after the first dose (5ml) her morning feed was amazing, she ate her entire bowl (or more correctly we fed her as we always do) of oatmeal, (that we can usually hardly get down with all the chocking/coughing/pghelm) in 15 minutes!!!!. And this happened with no pghlem whatsoever! The rest of her feeds also where pghelm-free until dinner.
We went all day with no vomits until the night-time feed, when she was showing some minor (not as bad as normal) signs of pghelm/coughing/throat clearing so I stopped the feed without finishing, BUT it was too late and she emptied her stomach on a throat clear.
Today (the 2nd day) we gave her a nap-time 2nd dose of Periactin (smaller, just 2ml) in addition to the night-time dose and lo and behold it was a NO VOMIT DAY.
The drug is supposed to be sedating, but I haven't seen much of that. She still took an hour 1/2 to go to sleep tonight (after giving it to her, which can be normal for her after putting her to bed if she got a long nap in).
But what I have to say the most amazing thing was when I fed her dinner tonight was that I got her whole dinner in with no pghlem. She even wanted to eat. She asked for the spoon and took about 6 bites of her own food (then refused, so I fed her the rest). I was finished in about 15 min max. It was actually a pleasure. a PLEASURE! we had fun together and giggled and played.
The love I'm feeling for my daughter tonight is especially indescribable, being forced to eat when she feels so horribly. she is one amazing little girl.
So this is how it's supposed to be??? I can now understand a bit (or have some sympathy for myself) why I'm so depressed all the time over Kaitlyn's feeds. It's really, really, really awful especially when you work at feeding her for 30+ minutes only to have her vomit it ALL back up again. It's all I know. Every meal. 4x a day. Every meal (including prep time, and vomit clean up time takes about an hour) Can I say how extremely, horribly awful it is normally? And that's my "normal" and my living-torture hell, not to mention how poor Kaitlyn feels.
Seeing how much better/easier it can be was an eye-opening experience for me. Maybe I will really be able to parent my new baby. (I've been terrified, as it's been sooooooo hard up to this point without much improvement).
I now know Kaitlyn needs antihistamines.. Now to get her doctors on board so we can come to the bottom of why it's happening in the first place (as I hate having her on the drugs, but I'm the one who suggested the periactin in the first place). I'll probably want to explore other ones (that so many of you have suggested). I don't care as much about the "appetite stimulate" side-effects of periactin, my gut tells me that if the pghelm stops maybe she'll want to eat...
(oh as I side note, I had a bout of morning sickness the other night (bleh vomiting -took my prenatal vitamins on not enough food in my tummy), and after the heaving was done (thinking about Kaitlyn the whole time), I had all this nasty pghelm in my throat that kept coming up on it's own for about the next 20 minutes. I can't even imagine being forced to eat while this was happening. Poor, poor Kaitlyn.
Oh and a few basic comments on some of the comments you've given me:
Kaitlyn's pghlem has always seemed to be in her throat (not her lungs), she always to be an EXTREMELY noisy breather (upper respiratory) until we got her on the blended diet. The Pulmonologist was never worried about the stuff, as it was upper. But it's also always been worse in the morning, she never gave me any solutions, and breathing treatments never seemed to make a difference. She doesn't snore at night unless her neck is positioned funny.
Does she really need a motility agent???
Let's see how the next week goes....I'm also already afraid of when I'm supposed to "cycle off the drug"...