Upper GI

So, Harlie's Upper GI went well I suppose. She was scared but still cooperative.

They put some barium solution into her feeding tube while she stayed under the x-ray machine. There is a monitor that the doctor watches to know when to take the x-rays. Since Harlie was being so good and cooperative, I was able to stand on the side of the monitor more than I have in the past. Usually I have to stand behind the monitor so she can see me. Anyway, the doctor was great at pointing out what was what and what was going on. She's also the same doc we had in January for her last upper GI.



She stayed perfectly still for the baseline x-rays, before we actually started the Upper GI.





Anyway, for the first time ever (on a study, I mean), we actually got proof that she is refluxing. I mean, we already know that by the fact that she vomits, duh. But, every single time she's had some sort of study, she never refluxed during the study.

Her nissen is still intact, and the doctor said it looked pretty tight. But, some barium still made it's way past it and into her esophagus (but she didn't vomit). I think she got some good pictures of it for her surgeon to see.

Here's the issue: does it warrant having another surgery to make the wrap tighter? If it were up to me - and she didn't need to have another jaw reconstruction - I would say no. I can easily live with the amount of vomiting she does right now. A few times per day sure beats the 40 times a day she used to vomit. So, I'm happy.

Tightening it has some drawbacks (if it's even an option). If you make the wrap too tight, swallowing becomes difficult, if not impossible. And with all the progress she's made lately on that front, we don't want that to happen!

But, it's going to be up to her plastic surgeon. If she has the same surgery she had before, then her jaw will be wired shut for nine weeks and it will be safety issue (aspiration). The surgeon that did her last surgery would not even consider surgery unless she had a nissen. We meet with a new surgeon September 14th for a second opinion. And then after that, we'll have to make some decisions. As usual, fixing one problem, causes problems in another area.

I suppose it's possible to do the wrap tighter (surgery), have jaw reconstruction, wait nine weeks, remove the wires, then undo the tightness of the wrap (surgery). Because while her jaw is wired shut, she can't eat by mouth anyway, so swallowing won't necessarily be that big of a deal (other than her own secretions). But that sounds like a lot to put her through. But, she needs this jaw surgery to move forward. We can't put that off much longer. So, I don't know what we're going to do. I guess we'll just have to wait and see what the doctors say. I'm sure she'll go back on Prevacid. In fact, I went on ahead and did that today.

For the most part, I feel like I'm pretty patient with Harlie's stuff. But, the thought of waiting six more weeks to start the ball rolling on any front regarding her jaw is killing me. If we meet with this new guy and like him and his treatment plan for Harlie's situation - who knows how long it is to get on his surgery schedule. If we decide to stick with her original surgeon, then we'll still have to fix her vomiting - before he'll do it and then who knows when we'll get on his surgery schedule. The same might apply no matter who we go with. And we have to hurry up so she can get her spinal surgery. I have a feeling her jaw might just have to wait. Which also kills me. Ahhhhhhhh!!!!!

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...