Thursday, May 28, 2009

Mad, Mad, Mad, I say!

I've officially HAD it with this nonstop, horrible, vomiting! I find myself thinking, "if I have to watch her vomit like that again, I'll (blankety blank)". But, I can't say that because I KNOW that I will have to watch her vomit again. And again. And again. And again! UGH! WHY????

When she vomited as a newborn, I hoped that once she sat up, it would help. Then at 12 months old, she learned to sit up. But the vomiting didn't improve. Then I hoped that walking would help. Well, she walked and vomited some more. In fact, she can walk AND vomit at the exact same time. You try it! I bet it's impossible! That's my girl.

Of course we also tried every formula made (including breastmilk). After all, these are all the clear solutions to a typical child's reflux issues. No such luck.

We also tested out different feeding pump rates, and medicines. Saw doctors and specialists and performed tests. Until last May, when we had no choice but to try surgery. There. Problem solved. Right?

NO!!!! No. No. No. No. No. No. No. And HELL NO!!!

Since August 2008, the vomiting has gotten progressively worse. It's kind of snuck up on me to be honest. It is really amazing how you can get used to something over time. And how I have been able to deny how bad it's gotten.

At this point, I don't know what to do. We've been transitioning her from Peptamen, Jr. (very specialized in that it's already so broken down so her GI system doesn't have to do so much) to Pediatric Compleat (less specialized and more like a blenderized diet, which is our long-term goal, and less broken down so her GI system can begin to learn to function more normally). In the weaning process, we mixed a little of the Compleat with a lot of the Peptamen, Jr. and then over time changed the ratio. It's very hard to tell at this point if her vomiting has gotten worse or not. I simply can't tell anymore.

So, just for kicks, we tried giving her straight Peptamen, Jr. (with NO Compleat in it) just to see if that made a difference. Nope. Still vomiting like no tomorrow.

So, what now? Continue with the weaning? Go back to Peptamen, Jr.? If she's going to vomit anyway, does it make a difference? UGH!

I'm sure you're wondering... "why is she asking me? Geez, woman! Go see a doctor for crying out loud!" Ahhhh, if it were only that easy.

Funny how we think that doctors know everything. Until we find out that they don't! Especially GI docs. Really, the GI system is still so much a mystery. Kind of like Mars. We know it exists, we know a little bit about it. But that's really it.

We've seen them. Several of them, in fact. None of them have been able to tell me anything that I don't already know.

Doc: She has severe reflux.
Me: Wow!
Doc: And delayed gastric motility (her system takes a little longer to digest food).
Me: Ohhh!
Doc: And she will probably outgrow it at some point.
Me: Fascinating! Tell me more!!!
Doc: There are tests.
Me: Well, that's good!
Doc: But they don't really answer any questions. They just cost you a lot in time, effort, comfort - oh and money. But, you've got plenty of all that stuff, so it shouldn't matter.
Me: Great! When can we start?
Doc: Well, it takes months of scheduling. Perhaps you'll have an answer before she gets married.
Me: Will my sweet girl be walking the halls of her high school one day carrying a bowl for her vomit???
Doc: Well, I've had years and years of education and training. I don't know.
Me: Oh, I feel so much better now. Thank you, Doctor!

So, I'm sure you're thinking, "What was it that set her off"? "What got her panties all in a bunch"?

Well, since you asked...

Things have been going so great with feeding lately. I've really been in heaven seeing food go in her mouth, and not come back out (well, not immediately, I mean).

Then yesterday, she decided to start gagging when I put food in her mouth - then, of course, spit it right back out. At first I thought I just had bad placement in her mouth. No, it didn't matter where I put it, she gagged. Now, she has NEVER gagged like that. So, I suctioned her trach thinking she just had too many secretions to handle the food, too. Nope. Didn't matter.

So, now I'm thinking... "What the blankety-blank"?! We take a few steps forward and then a million steps BACK? Oh no, sweetheart. Don't even think about it.

So, today we do another feeding session and Thank God, she swallowed some without gagging. Whew! Because I just can't go back to her not swallowing. I just can't!!! That would be too, too cruel!!! But, then she gagged. And then threw up. A lot. And I mean, A LOT. It just kept coming. It was awful. And I was heartbroken. I am heartbroken.

What happened? She's not sick (that I can tell). And at the beginning of the session, I think she was trying to tell me she wasn't up to it. She had her head down with both hands covering her mouth. Now, I know that's not using her signs, but that's communication at it's finest! But, I didn't listen. I can't always listen to her. If I did she'd probably still be using her walker. After all, I'm her Mom, I'm supposed to make her do things that she needs to do, even if she doesn't want to!

Tomorrow we have feeding therapy at the feeding clinic in the Children's Hospital. I can't wait to see what happens...


8 comments:

Donna said...

I'm so sorry :( Totally different of course, but if I have to see any more vomit today myself I may just go curl up in a ball and vomit myself. Maybe she has a touch of what Alex has? And if she does, I'm SO sorry about that.
For what it's worth your post literally had me laughing out loud. I totally feel your pain, but there's so much to be said that even though you are so mad you can still keep your great sense of humor!

How about we go halfsies on a top notch steam cleaner?!?

Hugs,
Donna

Janis @ SneakPeek said...

I know so little about Harlie's GI issues. But what was the surgery you had last year? And of course you have already tried all the usual Motility drugs, like Erytho & Reglan, right? Ok, moving on. Um, now I sound like the Dr., I dunno. Is she primarily oral? (aside from the vomiting) G-tube? Have you tried the GJ? Step backward yes, but she can't vomit what is not in her tummy. So, so sorry. :(

Susan said...

I feel your pain. Except for that the vomiting stopped for Ainsley with the surgery. I wish it had worked for Harlie. It is the worst, what you are dealing with. And the feeding issues are SO incredibly difficult. We too have experienced a lot of inconsistency. One day she's great another day NOT. You have to try to follow their cues but also push sometimes so they make progress. And it doesn't always go well when you do. Frustrating. I'm sorry. I'm going to send you an e-mail. Hugs.

Sue Mitchell said...

I'm so sorry Christy. I don't blame you for being mad. Vent all you want - that's what we're here for. I hope and pray an answer can be found for that dear sweet girl of yours, and soon!

Christy said...

Janis,
The surgery she had was a nissen fundoplication. It is supposed to prevent food from coming back up. Yes, she's on Reglan and they just doubled her dose. She's 100% g-tube fed, with minimal swallowing of baby food and thickened liquids (like at most, an ounce in one session). And I really don't want a g-j tube. That would be my last resort. We actually tried that in the hospital once, and she still continued to vomit stomach acid. It was awful. Congratulations again on Austin's hearing!
~Christy

Sandy said...

I can't begin to know how hard this must be. She is such a wonderful little girl and she shouldn't have to deal with this (or you). We wish and hope things get better soon.

grandma said...

wow...I truly don't know what to say Christy. You have tried different feeding techniques, formulas and surgery and she still is vomiting..what to do next. You need some answers from some doctor who truly knows how to fix the problem..but who? a surgeon, gastrointestinal or what? My heart goes out to you and I hope you get some kind of answer soon.

Tracy said...

Just a question and I'm sure you've already tried it all. But has Harlie's docs tried her on something like erythromycin or REglan for the gastric emptying delay? Just thought I'd ask. If not they may help get her motility going a little faster.

www.caringbridge.org/visit/margaretreed1