To Nissen or Not to Nissen?

I wish I could say that when the doctors told us about Mason's need to have a Fundoplication I studied it out thoroughly before I made a decision.  I did not.  I trusted the doctors that this was a life saving surgery for him, but I later doubted I had made the right decision.

He was vomiting most of his feeds at 6 weeks old and barely growing.  Not even the NG tube with continuous drip feed was helping keep all he needed to grow inside his stomach.  When the doctors told me about a surgery that would prevent him from vomiting, I was all for it.  It was an amazing thought that this Fundoplication, or Nissen ( named after the surgeon that pioneered it) was just what Mason needed to make him stop vomiting.  Knowing that he needed a tracheostomy and a g-tube placement I understood the importance of protecting his airway from vomited materials.  I agreed heartily to the Nissan along with the tracheostomy and gastrostomy. 

However, it was not the miracle I was hoping for and many parents I have met in hospitals since then have voiced the same concerns.

The Nissen is a surgery where a surgeon wraps the top part of the stomach around itself to make it very tight so no stomach materials could reflux out.  The surgeon was able to perform the surgery laproscopically on little Mason to save him the trauma of a cut from his public bone to his chest bone. I begged the surgeon to try it laprosocically,  - not sure why - just mother's intuition.  I was highly grateful that they did perform it with only three small cuts, but he was a baby weighing only 6 lbs so it was a difficult surgery laproscopically . 

At first it seemed that the surgery was successful.  He was not vomiting.  However he started vomiting a few days after of surgery.  He did not vomit as frequently as before, so that was good.  I was happy, but not fully satisfied as I was hoping for a miracle.  I noticed that it seemed to take him much more effort to vomit now and he seemed to be more in pain with the vomiting.  The Nissen gave us time to help him grow and keep more food in, but it also stressed me at the pain he exhibited when vomiting.  As he got older all the tests showed that his Nissan was in place and working, yet obviously it wasn't working fully as he was still vomiting.

Doctors suggested that we should redo the Nissan as it is possible for the wrap to get lose.  At that point I started researching the surgery more thoroughly.  This was also during the time Mason was inpatient at Kennedy Krieger Institute learning how to eat orally.  I was surrounded by other pediatric patients who had had Nissens performed.  I saw children retch violently but  were not able to vomit.  Yes, they kept their food in, but the retching was agonizing to watch.  Our roommate, a two year old little girl, became sick with a virus.  Her mother had the same illness.  The mother was able to vomit while her daughter simply retched and gagged without being able to rid her body of the virus in her stomach.   At that point I was grateful that Mason was still able to vomit.

Most G.I. doctors noticed how small Mason's stomach was when they performed an endoscopy .  I have asked if his stomach were so small  because the Nissan made his stomach smaller.  Various doctors stated it could have been a possibility the Nissan made his stomach smaller, but it is just a theory.  He struggles, even now, to fit a normal sized amounts of food in his stomach.  Although I cannot blame the Nissan for that fully, it is always in my mind.

This is my overall feeling and opinion about the Nissan.  If your child's life in in danger because there is a high risk your child will aspirate (choke) on stomach materials when refluxing, you absolutely should consult your doctor and consider the Nissan.  However, if the doctors are recommending a Fundoplication to help with weight gain or just simply to alleviate pain from reflux, I would think more carefully on that and do more research.  Our G.I. doctor said studies show that more people are dissatisfied with the surgery and have other issues like bloating, painful meals, difficulty swallowing, and retching.  Most patients that I have talked to or have read about seemed to swap one pain for another.

If I would have known all I know now about the Nissen when the doctors first suggested it,  I believe I still would have agreed to it.  There are three distinct reason I would have gone through with it: 1) because at the time he had already had a life threatening aspiration,  2) he had an abnormal Larynx which made it more difficult to protect his airway,  3) he was vomiting with every feed making it more likely he couldn't protect his airway.  Yes, the Fundoplication did bring other problems but I believe it helped him live.  Am I frustrated that he still vomits and that he has a terribly small stomach, but it was a necessary evil to help him live.  Will I agree to Nissan, No.  I feel we can work his nutrition other ways with multiple small meals and his night g-tube feeds.  Right now it is not worth the risk to put him through that surgery again.

These are simply my experiences with the Fundoplication, please make sure you discuss them fully with your doctor and read all you can about it.  Always look at the risks vs the benefits from any surgery.  If the possible benefits are worth more than the risks, go for it.  If you are unsure, pause and research more.  Remember this is just my experience with Mason's Fundoplication, it is simply observations and opinions, look to medical journals and your doctors to make a final decision.

Uggg!!! That Alarm Again.

Sigh, the late night pump alarm that still causes immediate stress at the sound, even if it is simply telling me to turn the pump off.  For those of you who have heard this high pitched, monotonous "beep, beep" of a feeding pump alarm you know what I mean.  It's so annoying, especially in the middle of the night when you desperately need sleep.  The stumbling out of bed, half dazed shuffle to the g-tube pump  because the annoying alarm woke you becomes routine. However this routine happens every single night without a break and yes, it always disrupts a parent's sleep and absolutely adds up over the years.  

At first when the pump was so new to us, before Mason even got his g-tube and only had an NG (nasalgastric) tube at 2 weeks old, I had to figure out this new piece of machinery that would constantly beep.  Was it beeping because he was out of food in his bag?  Was it beeping because there was a clog in the tubing?  Was it beeping because the NG tube migrated into a place that was blocking the flow?  What about migration to his lungs, oh how dreadful!!  That beep always reminds me of being tired, stressed, and needing to figure out what is wrong, again.

I have placed in the pages section definitions for all the different types of feeding tube placement meanings and another page with tips on how to figure out what is wrong causing your child's pump to beep.  I hope this will help the newest members to the g-tube family.

However, when you are tired and your child's pump is beeping, remember you are not alone in this.  There are doctors and nurses who are only a phone call away who can help you work these problems out.  Also, remember that although it doesn't feel like it, there are millions of children who have feeding tubes in this world and you are not alone.  Remember that you have a living child thanks to that feeding tube and pump that is causing you so much trouble.  Remember you are doing a job most parents or caretakers will never know and that makes you special.  You have the ability to learn and overcome problems whether it is late at night, when you are on vacation, or just trying to have a normal day.  Feeding tubes and pumps give us freedom to have a child home with us and alive!  Although, yes, very annoying.