Saturday, June 11, 2011

Thursday, June 9th, 2011

A note from Mommy:

I'm not even sure where to begin after today's surgery consult about the placement of Peyton's gtube.  OK actually I do know where to begin - for every other time the option of surgery was put before us we didn't really hesitate.  This time around we don't have a clear direction and that is not something we are accustomed to.

For those who haven't followed her blog from the early days, Peyton's gtube was placed when she was three weeks old.  Although we didn't know it at the time, the placement of the gtube was unusual as compared to most other children. When she was about 2 1/2 months old the switched out the gtube and put in the Mic-KEY button.  Most of the time when I blog I still call it a gtube but it is actually the button.  At the time that the Mic-Key was placed, Peyton had some granulation tissue growing around the stoma which is pretty common.  At the time they measured her for the button they measured a little bigger to accomodate the tissue.  A few months later Peyton was admitted for a pyloric blockage.  The stem of the Mic-KEY button was too long and had migrated into her pyloris causing an obstruction.  She went from a button that was like 2.3 to where she is now which is 1.5.  We briefly tried out a 1.7 last fall but are now back to the 1.5.  So in four years we have yet to truly upsize from the placement she had when she was a few months old and she is now almost four so that tells you the button they first put in was WAY TOO LONG!

When Peyton first came home she was on breast milk but when she was transitioned to formula she began to have more and more incidents of vomiting.  At the time it was attributed to reflux which is common in non trached/non gtubed babies let alone kids with extra holes!  There was no testing done, but she got started on reflux meds but even that did not seem to help much.  At around 7 months old, she developed a short lived stomach virus that resulted in a long lived "lactose intolerance".  Her GI at the time moved her to a soy formula and the vomiting virtually went away completely.  In May of 2010 while hospitalized for an URI, they did a blood test and determined her "lactose intolerance" is actually a severe milk allergy which was probably the cause of all the vomiting all along.

After moving to the soy formula we spent the next year moving her off of continuous feeds to 5 bolus feeds during the day and eventually we even got her off of night feeds all together.  We also did away with the reflux meds.  In the summer of 2009 her night nurse started to notice that she would wake up in the middle of the night in pain clutching her stomach.  This led to the infamous showdown in which the nurse said we were starving Peyton.  Eventually, I witnessed the button "sucking" in after she woke up one morning before I could start her first feeding of the day.  We contacted Peyton's GI but she had never heard of anything like it before.  As the months passed, we noticed that as soon as we would put a little milk through the button when it was sucking in it would release.  I did some research online and came across a few adults on some gtube forums who had experienced the same thing and they had also determined that starting a feeding was the only way to short circuit it. Although certainly not experts in anatomy Travis and I came to the conclusion that when Peyton's stomach was empty too long, the muscles of the stomach would start contracting and pull on the stem of the tube. 

In late summer of 2010, we got into the dysphagia clinic at Primary Children's.  We had just started back up with night nursing and had instructed the nurses that when Peyton would wake up in pain clutching her stomach to run a little water through the tube.  Unfortunately, they were having to do it multiple times a night and it resulted in a lot of interruped sleep for Peyton.  When Dr O'Gorman saw Peyton in clinic that day it just so happened that the button sucked in while we were sitting there.  She was honest that she had never seen anything like it.  With Peyton's jaw distraction looming on the horizon she didn't want to do anything at the moment except to get an upper GI study to look at the anatomy and determine if there was anything concerning about the placement in the meantime.  When those results came back that yes it was not normally where a tube was placed but it didn't look to be causing any harm we agreed that we would keep things as they were until after the jaw distraction.

Post distraction we started seeing Peyton's speech therapist again.  With Peyton now able to open her mouth and Courtney able to see in she mentioned that she saw some "cobbling" which could be indicative of reflux.  Since we had dysphagia clinic coming back up, she recommended that we talk with Dr O'Gorman about it just to be safe. 

With the distraction behind us, Dr O'Gorman felt that it was best to plan on moving the tube and during the surgery if the scope showed signs of reflux to plan on the Nissen procedure at the same time.  And so that is how we got to Dr Downey's appointment today. 

First off, Dr Downey had us go through the long history I just gave you above.  He verified that Peyton doesn't have formula showing up in her mouth during or after tube feedings and that she doesn't have coughing fits (beyond what would be expected with a trach). 

Dr Downey started off by saying that the reason for Peyton's unusual placement was probably not anything related to her specific anatomy (this would make sense since her first GI knew what surgeon had done Peyton's surgery based on where it was) but he would double check her upper GI that had been done last fall.  He indicated that another surgeon had decided to do a different placement because he thought it would result in less reflux (more on that in a minute) but nothing had ever been proven to show that it did.  However, there were other surgeons that got on board and started to put their tubes there as well - although they were far in the minority.  I quizzed him as to why the sucking in problem wasn't happening all the time but I pretty much answered my own question when I realized that for the first few years she was getting night feedings and the first year she was getting continuous feedings during the day as well - her tummy was just never empty long enough for it to happen.

Then Dr Downey did a short explanation of the anatomy with us.  In the first illustration you can see a normal tube placement.  It is left of the midline and below the esophagus.  Peyton's placement is on the opposite side (on the illustration next to the belly button).  As you can see based on where that is it is very close to the pyloris and duodenum.  In fact, Dr Downey said based on the length of the stem of Peyton's first button when she had the blockage we were very lucky it didn't blow out her duodenum!

Dr Downey also can't guarantee that moving it to the left side will prevent the sucking in problem but he is also highly suspicious that it would since he has also never seen or heard of the sucking in problem either.  So that brought us to discussion of the Nissen procedure.  The second illustration shows what happens during the Nissen fundoplication procedure - essentially the fundos (upper part of the stomach) is wrapped around the lower end of the esophagus and stitched in place.  It prevents refluxing but it can also prevent vomiting.  Now remember, Dr O'Gorman had said if there were signs of reflux that it would probably be a good idea to get the Nissen done.  However, I have heard so many negative things about the Nissen that I wasn't on board.  First off, Dr Downey doubts Peyton has reflux.  And there is no chance he would do the Nissen without first having several tests that show severe reflux.  As he explained once you do the Nissen there is no going back so it should only be used when everything else has been tried.  So before he would consider it he wants a EGD, probe test and biopsies of the stomach.  Although he is very cautious in doing the Nissen procedure he knows that not all his collegues have the same protocols and there are many children who have had the Nissen done without any diagnostic measurement to indicate reflux at all - let alone severe reflux.  Some surgeons just standardly do the Nissen with the gtube.

Then came the second part of the reflux discussion.  I have heard many parents say that after their child got a tube, they either started having reflux or previous reflux got more severe.  Dr Downey again pointed to the anatomy.  The normal tube placement is just below the fundus.  Because of the weight of the tube it can somewhat change the shape of the stomach and it is possible that it results in reflux.  This is just a theory and one that he does not put any stock in.  He did say, though, that another doctor in the practice completely disagrees with him and does think there is a correlation between tubes and reflux. 

Should Peyton have severe reflux and need a Nissen there would be no ability to have it done with her tube where it is now.  They would have to close off the current tube, move it to the new location and do the Nissen at that time.  It would be a 3-5 day inpatient stay.   Should Peyton not have reflux and we choose to move the tube to try to correct the sucking in problem it would most likely be an overnight stay - although that is only because we are not tube newbies.

So the first step is to have the EGD, biopsies and probe test done.  They can all be completed at the same time and my parents are hoping to have the ENT's throw in a bronchoscopy at the same time to look at her airway.  Dr Downey is going to get back with Dr O'Gorman to start that process. 

Meanwhile we have more questions than answers.  When I went into this appointment it was with the thought of getting the tube moved so we could get rid of the night feedings.  Travis didn't think it was worth another surgery.  At the end of the appointment I am in agreement with him.  If she has severe reflux then moving the tube is required to do the Nissen and we'll have to consider going down that road.  But if the tests don't show reflux (and we are pretty sure they won't) we probably won't go any further.  Although Peyton has to have night feedings, she is finally putting on weight, hardly ever vomits and is interested in eating orally.  We don't want to jepordize any of that by moving the tube and potentially ending up with reflux - it's just not worth it.

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