Friday, June 14, 2013

Conner’s Reflux and Motility Testing

Conner is in the hospital for 24-hour reflux and motility testing.

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He’s been home 15 months now, and he still struggles with crazy SEVERE reflux.

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It’s really more like vomiting, but it’s still classified as reflux.

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Conner vomits a minimum of ten times/day (every day since he’s been home), but sometimes it’s too many times to even estimate a total for the day.  And it’s not little bitty spit-up episodes.  It’s huge volumes of vomit.  Often.


Conner’s gastroenterologist has tried every single type of medication possible to treat reflux, including medicines that help to empty the stomach more quickly.  We’ve tried diet and volume adjustments as well, but nothing has successfully treated Conner’s reflux. Sad smile

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Despite the volume and amount of reflux/vomiting, Conner continues to gain weight and grow, which we are most grateful for.  We’re really baffled by this because it appears that Conner vomits more than he intakes daily.  Perhaps this is a surefire way to bring glory to God.  It’s quite a miracle in our eyes.

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Conner was put under anesthesia yesterday and two probes were placed in his small intestine/duodenum (the first section of the small intestine). 


Conner is having a pH Impedance Probe Test as well as esophageal manometry testing. 


Both tests require me to input info into the computer, as well as into an external portable measuring device.  I must input whether Conner is lying down or sitting up (change of positions), as well as documenting when he is eating and/or drinking.  I must also document if there are any external signs/symptoms of reflux, such as grimacing, crying, burping, belching, vomiting, etc.  In addition to putting this info into the computer and external device, I must also record it in a written diary, along with the time and explanation next to each event.


Needless to say, it’s been a busy 24 hours!!!


But the craziest thing is that Conner hasn’t vomited ONCE since we’ve been here.  NOT ONCE.  The gastroenterologist said this testing procedure doesn’t normally decrease reflux/vomiting, but perhaps Conner could be a candidate for Botox injections in the small intestine area (where the probes are) in order to control his reflux.  If the probes are truly a factor in the decrease of reflux (simply because their positioning/placement has done something to decrease reflux output), then Botox might possibly work, which would be less invasive and less risk than Nissen Fundoplication surgery.  (Conner might not even be a candidate for Nissen surgery because his esophageal muscles might not be strong enough to effectively push food through the tightened area at the base of the esophagus if he had Nissen repair.  We’ll know more after we get the results of the esophageal manotremy testing.)

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Conner has been such a trooper.  He is a great patient.  He’s only cried a handful of times.  He never has problems with anesthesia, and he wakes happily from anesthesia as well (he’s our only happy anesthesia kiddo!).  He’s content to hang out in his enclosed crib and watch children’s videos.  He does try to pull on all of his tubes and cords, hence the required use of his no-no’s on his arms, which he is NOT fond of. 


Conner is NEVER still at home—he’s like a little tornado of activity, always.  He is continuously moving and throwing every single item he can get his hands on (and he turns into Stretch Armstrong to reach items!), plus he’s quicker than a chameleon catching a fly!  So, having Conner be still and content in his hospital crib is amazing to witness.

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Conner’s probes were placed yesterday around 1PMish.  He had a stomach X-ray this morning at 5AM to check on the placement of the probes.  The gastroenterologist reported that the probes moved in the night and are not in the optimal position anymore, but testing will continue to see if they can use the results anyway.


Please pray for usable, useful, and accurate testing results, as well as for wisdom for the gastroenterologist to determine the cause (and hopefully a cure!!!) for Conner’s extreme reflux.  Thank you!

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