Saturday, January 19, 2013

Surgery :(

As some of you know, we have been battling Cameron's inability to gain weight and his eating habits for the past 10 months.  We have tried everything imaginable to get him to eat well and maintain and/or gain weight and nothing seems to be working.  We had been seeing a dietician through Shriner's hospital who offered us many great suggestions and tried her best to help us fix the problem, but we had no success.  We were left with keep trying and we need to put in a G-tube (http://kidshealth.org/parent/system/surgery/g_tube.html) for feeding if he doesn't eat. (Cam did not take well to the "scare tactic" instead he decided he really did not like the dietician) Back in November, things took a turn for the worse as Cam developed a persistent cough after eating and started to vomit after meals quite frequently.  We then turned to his pediatrician in hopes of finding a new path that may lead to some sort of relief.  She referred us to a Gastro and immediately ordered a barium swallow in fear that mechanically something was not working properly in his digestive system.  The Gastro said the study was negative and everything seemed to be functioning properly.  He then told us of a feeding disorder clinic for children that he was part of and felt that this would be a great fit for Cam as we all feel the majority of our problem is behavioral.  Finally, some sort of light at the end of the tunnel.............maybe someone here could help us!!!  With hopes high, on Jan 16th we traveled to Central Dupage Hospital to meet with all of the clinic Drs in one setting (Gastro, speech, nutritionist and psychologist).  They start by coming in together, asking questions and taking medical history.  Then they all leave the room to discuss a plan that they think can help us fix the problem based on all of their observations.  Still feeling hopeful, and a bit overwhelmed and confused at all of the days events, they reenter the room.  The result.... not quite what we had hoped for.  Cam will be going in for an endoscopy to rule out any other GI issues that may be causing him to not want to eat.  At the same time they will be putting his G-tube in :(.  As much as we didn't want this for him we know that it is the right thing to do for his health.  He will be having surgery on Feb 11th at Lurie Childrens hospital in Chicago, we will spend 3 days there learning how to use and take care of the feeding tube then we get to come home and hope for the best.  Right now we are still digesting all of the information and the fact that Cam will be going in for his 3rd surgery very shortly.  The Drs are all in agreement that the tube is temporary and we will still work to fix the underlying problem and eventually be able to remove the tube.  We have not told him yet that it is scheduled, and still are not sure when and how we plan to do so.  He will not be a happy camper, he gets extremely upset anytime someone mentions the tube.

I will keep everyone updated over the next weeks if anything changes and will post after surgery to let everyone know how it went.


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