Jenny’s Journey

Surgery went well and some updates

Posted by: Tracey on: July 26, 2008

Late posting this but all went well with Jennifer’s surgery.  She had her laryngeal cleft repair done at Children’s Hospital Boston on July 14th.  It couldn’t have gone better.  She spent two nights in the hospital there.  No complications or setbacks.  Thank the Lord for that!!  For the entire medical story click on her caringbridge site link in the sidebar.


She has already had her post-op appointments too.  We are to start weaning her thickness of her fluids around the beginning of August.  Then her next swallow study will be in early October.  Wish us luck with the weaning!

The other bit of news that we have received is that she is possibly fructose intolerant.  She had been having loose stools, bloating and gas for awhile and went for a fructose breath test which was abnormal.  They aren’t sure if the thickener she has to have in all fluids to not aspirate them played any role in the abnormal results though.  For now we treat her as if she is fructose intolerant and keep sugar out of her diet as much as possible and then the GI doc wants to repeat the test in a few months once she no longer needs thickened fluids.

My poor girl.  Now add sugar to the things we have to limit along with no milk and soy.  Uggh!!!  Though at least with the sugar it is a limit rather than a total elimination like the milk and soy.  She seems to at least have it pretty mild as taking all juice out of her diet seems to have helped a ton.

I think that’s the updates for now.  I’ll try and update more often.

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Do you have a child with a laryngeal cleft?

If so, and you found me through this blog, feel free to contact me. There aren't a ton of us out there and I feel like no one should go through that journey alone. I am always willing to give some support etc. Or you can join my laryngeal cleft support group/message boards. The link for it is in the laryngeal cleft page. My contact info is traceytrn @ gmail . com

Jennifer in her PICU room right after her laryngeal cleft repair

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Playing once she was transfered to a regular medical floor

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Jennifer’s type 1 laryngeal cleft

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Just after waking up from the laryngeal cleft repair

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Doing the fructose intolerance test

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Getting ready to do a swallow study to check for aspiration

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Samuel having an echocardiogram (US of the heart)

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Samuel’s heart

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Jennifer showing off her IV

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Samuel having an echocardiogram

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Echo picture of Samuel’s heart

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Samuel’s heart

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Jennifer showing off her IV

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