Friday, December 7, 2012

Nissens are Fundo! G I have a Tubie!

So I had an excellent conversation with the doctor today and got all my questions answered. It really pays to do your research. All the pieces finally came together and we reviewed her symptomology and are in total agreement that she already has severe reflux with atypical presentation of almost exclusively respiratory symptoms. You just don't hear of babies with severe reflux that never throw up, but my baby girl loves to be unique! That is what has made it so puzzling and idiopathic this entire time, and hard for me to research too.
What? You thought I was coming home Wednesday?
I wasn't gonna let you off that easy!
I still haven't hit your insurance cap yet...
They think that her RAD is very reactive, but to the micro-aspirations and silent reflux and not necessarily other triggers. This has me more relaxed now that she won't be under house arrest after all, though we will of course be taking plenty of precautions.

So as you can deduce, we are going ahead with the Nissen Fundoplication surgery as well as the G-tube. The fundo will eliminate or at least significantly reduce the reflux she has now. The G-tube will reduce stomach size and exacerbate the reflux so it makes the fundo even more necessary. Not to mention her RAD breathing treatments also aggravate reflux! I am fully confident that we are making the right decision. That is especially important because with her atypical GERD presentation we won't really have much of anything to confirm that we did the right thing. Hopefully her RAD will be less problematic and we won't have aspiration pneumonia, but aside from that we won't see a reduction in severe vomiting and pain and all the other typical GERD symptoms that lead most parents to this surgery far later in the game.

I've discussed the surgery with Tara who is all for it, mostly because she hates tubes in her mouth and nose and tape on her face. She is full of the cute every time I see her and has every nurse wrapped around her finger. She is the biggest baby in the NICU and the oldest, so she interacts and sleeps less and the LOVE her! Little Miss Popular.
It is good to finally nail down what I have suspected since her 2nd Delhi hospitalization. And if it took this long to finally confirm it in the US, I'm not going to fault them in India for not confirming it sooner but only failure to follow up diagnostically and treat it properly once Dr. Saluja suggested it as a possibility. I don't even know if they can do an Impedence probe test in Delhi, though surely they do Nissen's and G-tubes. They certainly couldn't do viral testing.

It is also a relief to know that it wasn't anything I did wrong or could have prevented from happening this entire time. It is so hard as a Mom not to second guess yourself about what you could have done differently to prevent it when you see your child suffer from something. Whether she was on a plane and caught a rhinovirus or not, she was doomed to wind up in a hospital with pneumonia soon anyway.

Swaddling. It does a baby good.

Vivek in the "straightjacket" swaddler Mommy
reserves for fits of the most epic proportions.
As a side note, Dr. Treen also reassured me that the reason the nurses and doctors don't react so much to her O2 dips during crying is that the monitor is not reliable during a crying episode and it is not anywhere near where it is reported to be. So I don't have to drop everything with my son to comfort her until she calms down unless she starts wheezing very badly. Good to know!

We know that the Nissen can have some complications, and it is not a cure all. It can be too tight where they have swallowing difficulty and it will set us back in bottle feeding and create an oral aversion along with gas bloat pain and venting issues. It can be too loose and she could still burp and throw up and reflux. The three little Nissens. This one is too tight. This one is too loose. Hopefully ours will be just right, though they loosen over time. It is the mose common surgery they do in the NICU, and this is a big and busy and well reputed hospital with very experienced surgeons so I have high hopes that hers will go well. It does loosen as they grow, especially in the first year, so if that happens before she outgrows her feeding issues/reflux then it may need to be redone/tightened.

Daddy and your brother seriously need some more estrogen to balance out the power in this household! Come home soon!

For those of you reading this with similar issues, I found search terms of "silent reflux" and "microaspiration" to be the best place to start, but had trouble finding anything written by someone who had a Nissen done on an infant with these specific and exclusive respiratory symptoms. I'm sure it happens, but the people who write about their Nissen experience are your typical refluxers who have been knee deep in vomit for a year or two with issues like failure to thrive and oral aversions and they are making desperate posts online. I take all anecdotal evidence I find on forums with a grain of salt, because it is not truly evidence and scientific articles are of the most value. Keep in mind that there are many Nissen horror stories out there, but the people who have had problems are a population that:
     1. Typically have more medically complex children where other things can be affecting their outcomes
     2. Are the people who are most motivated to follow forums and write about it. The folks that had things go great often move on with their life and abandon the interweb oversharing. :)

Dr. Treen assured me that they routinely do an upper GI series/manometry to rule out motility issues before they do any Nissen so they will know if a pyloroplasty or intestinal repositioning is in order. That was done this afternoon, and while I don't know results yet I'm sure they are negative. We already agreed she doesn't have any symtoms of motility issues, but I feel better that we are ruling it out for certain to avoid extra surgeries.

I told the doctor that I am accepting she won't be home by Christmas, but she told me that depending on whether we could get lucky and have an availability in the next few days it might still be possible. It depends on a lot of things. Laparascopy has faster recovery times and is safer, but if the surgeon decides that it is too risky because filling her tummy up with gas will put too much pressure on her diaphragm we'll do it as an open surgery with a longer recovery and more cool scars for her to show off. Mommy and Daddy have both had abdominal laparoscopy so here's hoping we will all have matching scars! It also depends on her breathing after surgery, because it is quite possibly she could go back on the ventilator for a few days. But then again she might not need it at all. As usual, Tara is in charge and running the show here and I'll just have to see whether she decides to celebrate the holidays at home or not. We'll find a way to celebrate no matter what! As for Vivek he will be content just to stare at the Christmas lights.

I'm hoping for a button style to be put in right away, but it is very common that  PEG tube is put in first and once the stoma heals a 3 months or so later they replace it with a Mic-Key button or Mini One button. Picture of the PEG below:

As you can see, the PEG is temporary for a reason. It is a big bulky pain in the ass and difficult to hide under clothing and super easy for your grabby little baby to pull out with their tiny flailing fists. But whether we start with a PEG or not, I'm going to fight as hard as I can for the Mini-One button by AMT because due to the low profile and failure rates alone it seems far better than the standard Mic-Key button.

Mic-Key® BalloonMini ONE® Balloon
Time to First Balloon Failure62 hours500 hours
Time to Last Balloon Failure185 hours2038 hours
Average Balloon Lifespan98 hours1187 hours

It seems like the Mic-Key winds up needing replacement due to ballon or other failure every 3 months or so. Here is a video that showed me what replacing it is like, and it is less scary than I thought. The baby certainly doesn't seem to be in pain.

Once we find out availability we will meet and consult with the GI surgeon who will do both procedures at once. I'm hoping for a real asshole. I believe that all the best surgeons are assholes. Bad bedside manner but an excellent mechanic. Those docs with a good bedside manner can compensate for not being as good, but a real jerk is still in the business for a good reason. :)

We will still be bottle feeding and use her G tube to finish off. She has a new time limit of 15 minutes to help reduce the risk of aspirations during swallowing, but when she wants to she can suck down a full 45mL during that time frame out of her 75. I'm hoping we can slowly increase bottle feeds and keep her very oral, but I have no idea how long it will be until she can be fully bottle fed. I do know they typically keep a G-tube in for 6 months after last usage before removal. The stoma heals up pretty quickly by most reports.
Today I decided to spur on my newfound positive state of mind by purchasing some G-tube covers off of Etsy. Here are the ones I ordered:  I like these ones with covers better for grabby little hands at!shop-online, but I'm going to see if a crafty friend can help me make some more. Here is a link to a great website with every G-tube cover you can buy.  And there are also belts to hold tubing secure on this website, which are especially necessary if your child has a GJ and/or is continuously fed or fed at night and could get tangled up.
I’m trying to learn what the best fabrics I can buy are and how to avoid edges and lots of stitching especially near the center. Stomach liquid leaking can absorb and dry and then stick, and you want absorption but not sticking. Absorption is important because the stomach acid can leak out the edges and cause irritation, infection, and some raised red skin called granulomas. The G tube covers serve the same purpose as gauze or makeup sponges folks use for that purpose, but are way more fashionable! My princess needs her tube to look FABULOUS!

I plan on emptying the hat/shoe/sock drawer in the high boy and making that the G-tube supply drawer. I have a new shopping list so that we'll have everything we could possibly need when she comes home and can experiment and see what works best. The following website helped me get some ideas:
My personal favorites are meat tenderizer and flat coca cola for breaking down protein to clean out tubes, and clear nail polish to paint over syringe markings so the lines and numbers don't rub off after constant usage and sterilization. There is a lot more that I have yet to learn, but I have a good start. And despite impending surgery, I'm feeling positive and relaxed about the future.

1 comment:

  1. So I'm guessing there are very few mothers out there who laughed as hard as I did at your title. I "get" it:) I was very much in favor of Hayden's Nissen and g-tube, mainly to help reduce his aspiration issues (he was never planning on bottle feeding), but also, because I had been told by countless moms that their babies felt awesome not having an annoying tube stuck down their nose. And I couldn't agree more! The hardest part was that they had to vent him during surgery since he is on o2 regularly. He did have a PEG until Monday when it started leaking, and we did an emergency switch out to the button. Since he's on continuous feeds, it hasn't really mattered, but the PEG really wasn't bad. Go with shirts and pant sets rather than onesies-- much easier:) Feel free to email me anytime if I can offer any support! x