We have another surgery date.

Late Friday afternoon, I got a call from Harlie's plastic surgeon's office. She said that Dr. Magee had a cancellation and he could do her jaw reconstruction on, gulp, DECEMBER 9th!!!! We were thinking this surgery would happen sometime around February.

It's just kinda weird to think about it being so soon. Maybe I'm in shock. I need time prepare - mentally. And right before Christmas?! We were supposed to go to Pittsburgh the week before Christmas. Now that won't happen. There's no way she'll be able to travel that soon after surgery.

But, I don't see how we can pass up the opportunity. And I guess it's a good thing that I won't be able to spend the next several months thinking about it.

Yep, that's a really good thing.

Luckily, Tom's mom can come down to help us with the boys. And it's better for Tom's work schedule to do it in December vs. February. So, hopefully that means he can stay with me the whole time she's in the hospital. If I remember correctly, she was in for just about three days last time.

Uh oh. I just realized that she needs to get that G-J Tube before she can have the jaw reconstruction. Hmmmmm. I wonder if I can pull that off. I think they do it radiology? So, maybe that will help? Ugh. That will definitely be the first call I make on Monday.

Anyway, so early this morning my friend, Natalie and I were on our way to meet our running group for our last pre-race run, when we were rear-ended at a red light. We were just sitting there chatting and BAM! There was no warning. No brakes screeching or anything. Which, honestly, I think was to our benefit. We were relaxed when we were hit, which I think is a good thing. His car was pretty crumpled and both his air bags deployed.



Natalie's car appeared to have just minor damage to the bumper. But when we drove away, there was definitely something going on underneath the car. We didn't make it to the run, which I guess wouldn't have been that smart to run right after that anyway.

We are fine, by the way. Just some lower back stiffness, which I really think will be fine in a day or so. Now we just have to hope that nothing like this happens on our way to the race! Missing the race would really be VERY disappointing after all the training we've done!

Well, that's it for now.

Take care,
Christy

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