Sunday, September 13, 2009

GI Appointment

On Tuesday, September 1st, Harlie saw her GI doc. We've seen him a few times. The first time we saw him was shortly after her lobectomy in August of 2007. At that time, he recommended a nissen fundoplication (which she ended up getting in May 2008) and a pyloroplasty. Pyloroplasty is a surgical procedure performed to widen the opening between the stomach and the small intestine. The opening between the stomach and small intestine is called the pylorus. The pylorus, or pyloric canal, is a short canal primarily made of muscle. The canal can become too narrow, in some conditions. When the canal becomes too narrow, food and liquids may not be able to pass. This can result in symptoms such as nausea and vomiting.

At the time of our fist visit, I said no to both procedures and went home to try different foods, meds, etc. to stop the vomiting. But, nothing worked.

Now she has a nissen (not working the way it should) and we're back in the same position we were in during the spring of 2008. She needs another jaw reconstruction, and we have to stop the vomiting to do it. Now that we've done the nissen, we don't have a lot of options.

So, back to the GI doc to see if there are any new options. He again mentioned the pyloroplasty. To which I said "no" again. If they could tell me that she has a narrowing that warrants that drastic of a procedure, then fine. But they cannot tell me that. And in her case, I just know that it would cause more problems than it would fix. So, therefore, it is really not an option.

So, after making him think a while about it, he came up with a gj-tube. Food would no longer go into her stomach, it would go straight into her jejunum (small intestines). The theory is that you can't throw up if there's nothing in your stomach.

After her lobectomy in August of 2007, while still in the hospital, they tried an nj-tube (which is a tube that goes into your nose and all the way to the jejunum. They didn't want to change her g-tube until they tested the theory first. But the nj-tube is not as secure - since she was almost one and could pull on it. Especially since she wasn't used to a tube taped to her face. So, it didn't work. She still threw up stomach acid. Of course, that was before she was on Prevacid, so maybe that would help stop that.

There are definitely some negatives:

she would have to go back to 24 hour continuous feeds - YUCK!
she would have to go back to wearing the feeding backpack all the time
she would have to go back to the formula that we just worked for MONTHS to get her off of (since it is already so broken down, it is better since her stomach can't help her intestines break it down)
It is going backwards in the sense that her stomach is not learning how to fill up and then empty, like normal

But there are definitely some positives:

it is only temporary (versus a surgical procedure like making the nissen tighter or a pyloroplasty)
it is not invasive (like a surgery)
it might just be the answer to stopping the vomiting long enough to get her jaw reconstruction done

So, I really think the gj-tube will be the best way to go. And I suppose we could get it enough before her surgery to give it some time to show us if it will work or not. Plus, I don't think we really have any other options at this point.

I told her GI doc that if it weren't for this jaw surgery, I would live with the vomiting as it is - just fine. Seriously. I hate it. But it's all we've ever known with her. And I'm sure she'll outgrow it. And he just looked at me. I said, "She WILL outgrow it, right"? And he said that he didn't know. Which, I guess kinda makes sense. It's hard to predict what's going to happen if you don't even know what's causing it in the first place. But, I still believe she'll outgrow it. I have to.

I also asked him about her Reglan, the medicine that she's been taking to help increase her motility (help move the food through faster). I don't know if you've seen the health alerts about it. But they're saying that it should be used for a short time only. She's been on it for two and a half years! So, even though it might be safe for her - I just see no reason for her to take if it does NOT help her. And with her vomiting all the time, is it even helping at all? He said he didn't think it was helping her. Certainly not enough to risk it in her case. So, he told me to take her off. And so far, I notice no difference. Other than it's one less medication to give her (which ROCKS). And that one had to be given every six hours. I do not miss it. And I don't think she does, either.

So, we wait to talk to this other plastic surgeon to get his opinion and then we'll make a decision. That will be nice. Just to decide and start moving in some direction again.

Okay, enough GI and on to something else...

Take care,
Christy

4 comments:

Grandma said...

Anyway you look at it...you have to make the right choice for Harlie. It is a shame that she has to go thru anymore surgeries at all..no matter how big or small they are. You are Harlie's advocate and you will make the right decision.

Beverley said...

I think you are on the right road. Especially getting the GJ earlier enough to see if it will solve the problem...after all she may not vomit if there is nothing irratating her throat and stomach as there was with the Nasal GJ.

We took Leyda off Reglan and we used erythromicin for her motility....just a small dose 2x day...now the PLE keeps her very regular...you eat - you poop!

Plumsmart is a fantastic high cal juice for 'motility!

Kim said...

Not a clue what to say to that. I don't know how you make the decisions you do, but you always end up making the right one, so trust your gut - then you know you're on the right track. :-)

Allie said...

Christy, you are so smart. You are doing an awesome and incredible job.