Friday, December 21, 2012

Feeding Update Hmmm and Arghhhh

Be careful what you wish for......remember the post from November.  Something to the effect of "at this point I just may be hoping for something that can be surgically repaired".  Well, they found something but they are not sure if they can repair it in David.  A laryngeal cleft, type 1.  The most mild form.  Not typically associated with Down Syndrome although when I put together my engineering brain it should be.  It is something that is not fully formed (just like his heart that had a cleft mitral valve, hmmmm). 

His case becomes more difficult because he does not have extra tissue there to just stitch it together.  So they are considering an injection that would last 3-6 months that could be repeated. 

What is this laryngeal cleft, in simple terms it causes kids to aspirate (in simpler terms drinking liquids can go right to the lungs).  What signs do we see in David since he refuses to swallow?  Well, he has a high incidence of water down the wrong pipe.  Swimming or baths or the rare occasion of a sip of water.  Often ends with choking, gagging, coughing, and a big burp.  Usually followed  by crying.  Would you want to try to drink if this was your typical experience with drinking, hmmmm.

Our doctor is not a big proponent of moving forward with the repair.  He refused to scope to look for this defect and only reluctantly agreed because the GI was going to scope with or without him.  He thinks it is not a huge deal because David doesn't aspirate because he doesn't drink.  Well, what if fixing it could lead him to drinking and eating and removal of the g-tube. 

This is going to lead right into a doctor vent.  The ENT does not deal with feeding issues.  He knows nothing about feeding.  Yes, David historically has a million reasons why he doesn't eat, but now he has one that is possibly able to be medically repaired which could change things.  The doctor who has never observed feeding therapy for any child, yet alone my child, still thinks the feeding issue is behavioral or a down syndrome thing.  Although our current feeding therapists believe that to be incorrect.  Arghhhhh.

The hero in this story is the GI doctor who is diligently pursuing this with the ENT and trying to get him to change his mind.  My heart tells me to change ENT's (although all roads lead to this ENT for pediatrics and down syndrome in the Phoenix Valley) although I do know he is a brilliant doctor.  His bedside manner has rubbed me the wrong way for 2.5 years.  He has placed David's ear tubes twice and taken out his adenoids and tonsils (all medically successful).  I am leaving this decision until January.

Until later, David remains 100% tube fed and a relatively happy toddler.  Mommy remains 100% aggravated with the medical community, a little short of sleep, and in love with her husband and two children.

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