Friday, September 16, 2011

Surgery #3

Brynn is headed for surgery to undo her Nissen Fundoplication. The Surgeon--the most experienced in the State of Utah's Primary Children's Hospital--says he's never undone this surgery before or known anyone who has. But our date is set for October 7th.

Warning: I have not written about these details before because they make for a long and sad story. But sometimes life deals us sad stories. And I choose to feel the sadness, let it pass, and then feel the peace.

For those of you who don't know and yet still care (which I realize is a small minority), here's a quick recap of the Nissen Fundoplication (or "fundo" for short):

As you can see, this procedure involves taking the fundus (the top of the stomach) and wrapping it around the esophagus. This procedure is done in children and adults and is most commonly used to treat severe GERD (Gastro-Esophageal Reflux Disease). GERD essentially means that the valve into the stomach (noted in red on the photo) doesn't do its job properly and so food and acid from the stomach go up into the esophagus and cause chronic, severe heartburn. The fundo literally ties the valve closed, making it so the patient can swallow food, but nothing can go back up.

Since nothing can go back up--including air--fundo patients can not burp. Obviously, this causes discomfort as more air than usual heads to the other end.

The fundus part of the stomach is also a very important part of the stomach, so having that "tied up" (no pun intended), has some consequences as well. Obviously, digestion and absorption of nutrients diminishes. In addition, the stretching that occurs to accommodate an over-filled stomach usually comes from this portion of the stomach. This means that over-eating will hurt even worse than it does for a normal person. In Brynn's case, any eating will hurt, but it will hurt the most when recovering from periods of sickness when the stomach has shrunk from fasting.

Although a patient is supposed to be able to vomit when he/she has the flu, a more common negative side effect is that the fundo will be too tight and vomiting is impossible. Brynn's is too tight.

The most horrible side effect of about 30% of fundos is retching, which is painful, violent dry heaving since the patient can not vomit. In nearly all cases, however, the retching ends after 6 months. For a very small percentage of children (and the percentage increases sharply for preemies with low birth weight like Brynn), the retching can be chronic. Our Kansas GI docs didn't tell us about this additional risk, but our new Utah GI doc says that this tiny percentage are her "saddest cases."

First, we had bad advice. (Warning, I am using this as an excuse to vent:) Our worst medical experience was with the GI department at Children's Mercy Hospital in KS. They made zero attempt at informing us of pretty much anything--including simple things like the fact that some of Brynn's tests would require GENERAL ANESTHESIA and A BREATHING TUBE (we literally found out 5 minutes before the procedure) and that her tests would require an overnight stay (we were told it was a same-day procedure on more than one occasion only to realize we should have packed an overnight bag). Even still, I am an avid researcher, so except for the whole increased-risk-for-chronic-retching-in-preemies thing, I knew most of the risks of a fundo and really didn't want to do it. So, bad advice aside, there were other reasons.

Second, although almost all of Brynn's tests came back normal (an Upper GI scope, a swallow study, a lower GI mobility test, allergy testing, ultrasounds, etc.), a Ph Study did show she had a mild case of GERD. Regardless of these results, she still had unexplained projectile vomiting--up to 8 times a day. She was still gaining weight with the vomiting, however. She wasn't gaining much, mind you, but still gaining nonetheless, so this wasn't the full reason either.

In fact, we had actually decided against the fundo.

But, the day of surgery, the final binding reason reared its ugly head: we thought Brynn might be silently aspirating (i.e. getting fluids in her lungs without coughing to warn us). FYI to any Googler who may be considering a fundo and happens to be reading this, aspiration is the ONLY reason I would EVER do a fundo on a child younger than 3!!!

I digress. Anyway...

Although the tests showed she wasn't aspirating, she had a really low blood-oxygen score the day of surgery. So low, in fact, she probably should have been on at-home oxygen again. I interpreted this to mean that she was probably aspirating and we just hadn't been able to catch it on any tests.

I wish now--oh how I wish--that I had known then what I know now: it was a faulty reading.

I wish now--oh how I wish--that I had known then that her oxygen levels were fine and that she really wasn't aspirating.

I wish now--oh how I wish--that I had known then what we discovered 6 months later: that the cause of her vomiting was simply an overreaction to the stress on her body caused by weaning her oxygen too soon. She could breathe, yes. But she couldn't breathe AND digest.

I wish now--oh how I wish--that I had known then that she had a very good chance of outgrowing the vomiting in the coming months, as her lungs grew stronger and her body matured.

But I didn't know those things. And wishing is useless. And guilt is unproductive. And regret is a vacuum. So I choose to feel them when they come, and then I choose peace.

For kids like Brynn, who retch chronically, few options exist. Only one man, Dr. Hymen, has researched the miniscule population suffering from this and his advice is to put them on Amitriptyline (an anti-anxiety drug for adults) and Gabapentin (a gut relaxer). The reason this works is because the retching becomes a vicious pain cycle. The brain's first reaction to stress--even a minor stress--is to retch, which causes more pain, and reinforces the body's pain cycle. The anti-anxiety drug reduces the brain's "freak out" response to minor stresses and the Gabapentin reinforces it by relaxing the gut.

As much as I recoil in horror from the idea of putting a toddler on an anti-anxiety drug, it was our last option.

Brynn has been on Amitriptyline for over a year. For the first three months she was on it, it was a miracle drug. She started eating--voraciously--and after learning to chew and swallow, eventually was eating nearly all her solids by mouth. Aside from learning to drink liquids, she was nearly weaned from the G-tube.

But after she got her first cold, her body was stressed, and she retched regardless of her meds. Shortly after that, she got the flu, then another cold, then 3 more colds .... and here we are today. The Amitriptyline isn't effective anymore. We've tried a host of other drugs too long to recall.

Brynn is still retching.

And my heart rips out of my chest every time. It makes me so sad that sometimes I can't be sad anymore. So I get angry. But I try to feel that, too, let it pass, and then choose peace.

Even though our experienced surgeon has never seen anyone undo a child's fundo, our GI doc (well known across the country and friends of Dr. Hymen) has seen only ONE case similar to Brynn. After exhausting all options, they finally undid the fundo. And guess what? The retching stopped.

Let me repeat for emphasis: the retching stopped.

This seems like a distant hope to me but--Oh! how it would be a dream come true.

So, precedents aside, we are undoing Brynn's fundo on October 7th.

She could very well just continue her routine, only vomiting instead of retching. She could have a completely useless fundus and esophageal valve since all muscles atrophy without use and hers have been tied in a knot for the last 2.5 years. She could have severe reflux as a result. I don't know. Nobody knows.

But I hope.

And I choose to believe the simple truth: sometimes we do the best we can with the information we have--even if it's bad information. I choose to forgive all those that gave us bad advice. I choose to accept the fact that sometimes a good oxygen reading is hard to get on a little one like Brynn. I choose peace. And with God's grace, I can have it.

2011Res: To Matt: I love when you take me to the Temple. I love the peace we find there about scary unkowns. To my girls: today I savored our laughs at bath time. Brynn just figured out that the sponge numbers not only stick to the bath walls, but ALSO to Heidi! What fun:

Dear Mr H: today I made our post-Temple evening extra fun because I love you.


Alyson said...

I shall cross all my fingers and toes and say extra prayers that this works. My heart goes out to Brynn, and to all of you.

The Morton's said...

Natalie- I had both these surgeries! First the fundo and then the fundo corrective surgery to take out the wrap. Very effective!!! Good luck!!!!

TiAnn said...

I do appreciate you sharing these experiences. I value the new perspective about your struggles & the strength that you continue you to show. I think you're amazing & I'm glad that you let yourself go through the natural emotions before choosing peace -I think thats really very necessary. I've also meant to tell you how much I've really enjoyed your blog & the variety of topics that you have so openly & honestly discussed. I admire your courage to be honest despite the criticisms & I believe that our society desperately needs your moral conviction & less political correctness. I think that your delivery has been good & well thought out. So thank you again for sharing. Your precious girl & all of you will be in our prayers.

Anna said...

Oh, poor little Brynn! I'm really excited to see how it all works out. It sounds like it is completely worth the risks. I'll be praying for you guys!

PS--Who is your GI doc? Is it Harnsberger? I LOVE HER! :)

Natalie said...

Alyson--thanks, as always!

Chelsy--I'm so glad Brynn's not the only one I know! Did you get it loosened or totally undone?

Tiann--Thanks. I really, really, really appreciated hearing that. Really. It even made me teary.

Anna--YES! Harnsberger is the best specialist I've ever seen! I'm so glad you told me she was worth the wait or I may not have made myself meet with her (after our terrible GI experience in KS, I'd lost my faith in the field entirely).

Lindsay said...

Good luck! We will be praying for you that all goes well!

Kate said...

We can be good babysitters for Heidi while Brynn is recovering. Jason is a very good entertainer.

The Skillerns said...

Just happened upon your blog when I googled about getting fundo undone. My daughter has a fundo (got it at 6 weeks old) and has HORRIBLE gas and has only been able to drink 3 oz at a time. It was fine when she had her g tube still a s we could "burp" her through that, but as soon as it came out, we had terrible issues with gas. Curious if the undoing helped your girl?

Natalie said...

@ The Skillerns: undoing the fundo was a major step in the right direction for us. It didn't solve all her issues but she has definitely gone uphill since then. The biggest difference in her improvement, I believe, is her change of diet. We've tried a lot of different approaches but GAPS diet (Gut and Psychology Syndrome by Natasha Campbell-McBride) has really helped. It finally stopped the retching/vomiting and we are about 10 months vomit free now! She eats way better orally although we're not entirely rid of the G-tube yet. We used to have to "burp" her through the G-tube quiet frequently, and she suffered with constipation as well. But since changing her diet all that has resolved. I wish you well. Life with sick little ones is tough! Especially when you have to make so many decisions on their behalf. If you have any more questions, I'd be happy to hear more of your story. You can email me at n a t a l i e ( dot ) hunsaker (at) gmail. c o m

Paul D said...

Hello, I am not sure if you are still posting but was hoping to contact you about this post in particular. I see it was written almost 5 years or more ago and was hoping for more update. Our daughter 6 months old has a nissen and the retching has been terrible since day one and no answers for 3 months about what to do