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the eric update - day 86: photo op! unexpected rop exam. upper GI. more surgery? longer stay?



one of eric's neonatologists from his old nicu stopped by today. she does research at the new nicu and after talking for a bit about how he was doing, she asked us if we'd allow her to have some pictures taken for a publication that they are putting together about the ROP research that she's doing with eric's opthamologist, dr. droste. of course, we were happy to have them take some pictures of little odin, on the condition that i could take a picture of them taking a picture of him.

the man in the photos is dr. droste, who performed eric's rop surgery and the woman in the lab coat is dr. poortenga. we like her a lot, since her quick actions helped to unstrangulate his strangulated hernia on day 35. had she not been successful eric would have been transferred to the new nicu much sooner for emergency surgery. she's very nice and is one one of the many people that we were not able to get a picture with before leaving the old nicu, due to the quickness of the transfer - so it's nice turn of events to finally get the picture afterall.

during the photo-op, dr. droste took a moment to perform a follow up exam for his recent rop surgery. the good doctor still thinks eric looks "good", but believes he has a 50% chance of needing further surgeries ( which is a higher estimate that he provided immediately after the surgery). he also clarified that kids with disease similar to eric have a 20% chance of developing more severe ROP, an 80% chance of ending up with 20/100 vision or better and a 60% chance of having 20/50 eyesight or better. so, there's a good chance that he'll need some sort of eyeglasses in the future, but that was probably going to happen anyway, since nearsightedness runs in the family.



after the photo-op, we went on what eric's nurse called a "field trip" for his upper GI exam. and what a field trip is was! i think i might have left the mistaken impression that we were overly concerned about the radioactivity of the barium during the exam. i guess it was poor wording on my part, since kris and i have both had upper GIs and know that while it's not a risky exam, we know that it's not exactly a walk in the park either and all things being equal we'd have preferred to not have to have him wheeled to a far corner of a hospital, strapped to a board and rotated around while drinking a barium milkshake. but that's just us being worry wart parents, because eric simply couldn't have cared less. he took it all in stride and, amazingly, didn't cry once. he just looked around and calmly took it all in. i guess in the world of a micropreemie, it's just another day in the nicu.

unfortunately, they discovered that eric is refluxing almost as soon the milk hits his stomach, which is not good. the preliminary assessment is that he has an undiagnosed hiatal hernia, which happens when the stomach prolapses through the diaphram. although it's a relatively small hernia, it could still be the cause of why eric is refluxing so quickly. we don't know much at this point and will have to wait until tommorrow when the pediatric surgeons get a chance to review the results of the upper GI. why would the pediatric surgeons be reviewing the upper GI? because the neonatologist's hunch is that eric should have the hiatal hernia repaired and is also a canditate for a surgical procedure known as "nissen fundoplication" which strengthens the stomach valve. it's hard to imagine that a little over a week ago, we were close to going home with eric and now it appears that we'll need to make some quick decisions about an ever expanding list of surgical options.

while it seems reasonable to contemplate repairing the hiatal hernia, we were a bit surprised to hear that they also thought he might benefit from the nissen procedure, since my understanding is that it's done as a last resort. perhaps they'd just like to do it if they already have to have him in the operating room. in any case, we'll know more tommorrow after talking with the surgeons.

unfortunately, if he does need surgery, unlike the inguinal hernia surgery, they don't often perform it on babies that weigh less than 2,500 grams, which means - under optimal conditions, we could be faced with another 10-20 days in the nicu, just waiting for him to gain enough weight for the surgery. and if he starts having problems gaining weight due to the reflux, then it could even longer.

temporarily abandoning the rollercoaster cliche' in favor of the marathon metaphor - while things might look quite a bit different tommorrow after we talk with the pediatric surgeons, it's hard not to feel like the finish line keeps moving farther and farther away.

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9/28/2004 11:56:00 PM 5 comments

5 Comments:

I had always heard of Nissen Fundoplication as a last resort too. In the CF community reflux is quite common and most parents I know who have faced this decision have gotten 2nd, 3rd, 4th opinions. Ricky was a candidate about five years ago and I got a second opinion which ended up in him not having the surgery. He does fine on reflux meds. Of course for someone who does not have improvement on reflux meds, surgery might be the right choice.

Another thing to consider, a person who has had Nissen cannot burp or vomit. This may not seem like a horrible thing but it is good to be able to vomit when you've got food poisoning, for instance! :)

Have you asked if they can just do surgery on the hernia (I guess that's plural now, actually) and not the Nissen to see if that will help with the reflux?

All of this just my humble opinion, of course, but something to think about.

Best wishes,
Becky in CA

By Blogger Becky Sprecher, at 12:17 PM  

thanks for the information becky. no, i didn't know that you can't burb or vomit after the procudre, which seems like an important thing to leave out. i haven't had much time to look into it, except for quick searches on the internet ( always dangerous, of course ).

indeed, kris and i are going to advocate that they repair the hiatal hernia and not perform the nissen procedure, unless they give us good reasons for doing it. and even then, i'd imagine that we'd get a 2nd, 3rd and 4th procedure.

By Blogger e3, at 12:33 PM  

I can comment on the ROP post-op by saying - Are you sure we didn't have the same eye surgeon? Those are the exact odds we were given the second week AFTER surgery. I am happy to report that Kyle's vision is still perfect. It is something that we have followed up on every month though -just in case there is a change.

I agree on trying to hold off on the fundo op. Sounds the hernia may be the issue. Kyle is experiencing Kidney refulx (Hydronephrosis) - they are holding on it's repair for a while, because his stomach reflux actaully contributes to it, and the Hydronephrosis often goes away after regular reflux resolves. Strange how all of these things affect other issues in ways that you normally wouldn't realize.

Good Luck :)

By Blogger Katra, at 3:52 PM  

The fundo isn't such a bad operation. Burping is still possible, but what happens is that there isn't as much flexing of the pyloris after to allow the stomach contents from rising up past the repair. This is a good thing. I've had many patients who've had this procedure done and the results are amazing!

It's scary and overwhelming, I know. But the hernia can be repaired at the same time and with the fundo in place, another herniation in that location is far less likely.

Hoping and praying for all of you!

By Blogger Da Goddess, at 4:40 PM  

well, for now we're going to wait and see if the reflux improves with non-surgical treatments and a little time. apparently, it's standard operating procedure for them to do both the fundo and the hiatal surgeries - meaning that i'd have to push pretty hard to get them to not do one and not the other. the fundo seems to be one of those areas where you can get the entire continuum of responses when you ask if it's effective and relatively safe. a recent journal of neonatology article on GERD, certainly indicates that it's something to do with eyes wide open:

The success rates of the
fundoplication procedure have been variously
quoted as between 57-92%. Mortality in large
series has ranged from 0-4.7%. The overall
complications rates have varied from 2.2 - 45%,
most common being breakdown of wrap, gas bloat,
intestinal obstruction and infections.
that said, i've heard from plenty of people that the effects of untreated, chronic reflux can also get quite ugly and that's it's worth the risk. at least we have a little time to do more research and hope that the barley in his feeds helps keep things under control.

By Blogger e3, at 11:37 AM  

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