Friday, December 10, 2010


I feel as though  I'm losing my son piece by piece bit by bit.  Yesterday was his ENT appointment.  There is no fluid behind his ears.  It is permanent hearing loss.  Most likely from the high doses of IV antibiotics that have had to be given over the last 12 months, meds that were needed to save Eli's life.  But now here we sit with a child that can't hear.  The doctor said it's not fixable.  He is going to do a special brain stem test to determine if he has any hearing left at all.  This test will be done in the hospital under anesthesia.  They are getting it schedualed and will call me.  He also asked if we had Speech and OT to start working on signing.  I informed him we had already begun learning since Eli doesn't make a single sound.  I am stunned by all of this.  At one point he could hear.  At one point he passed all of his tests.  I just can't believe this is happening.

We sat back yesterday and thought back thru the last 12 months.  Before he was born he had the kidney problem, then at birth we knew of the neurological twitches and such, then the GERD began.  Then over a bit of time the lungs, then the heart, then the esophagus, then later the stomach, then his feet and hands, then now his ears.  I know I'm missing more things as well.  Slowly but surely systems that were testing out normal and fine are stopping functioning or stopping functioning correctly.  Someone is missing something.  The ENT, cardiologist and his nurse agree with me as well.  I don't know what we are missing, but something is causing each of Eli's systems to slowly stop functioning properly.  We have to find it and figure out how to fix it before more systems are affected. 

I received multiple phone calls last night with information.   I'm looking into sign language classes for Bob and I and for the kids.  A friend is looking into support systems and advocate groups in the community.  I will be calling EVERY single doctor today to push them to find out what's going on.  I'm going to go back thru all of his records and make up a detailed time line.  Someone has to know what's going on.  Someone has to do something.  Someone has to make this stop.  Someone has to fix my baby.
Oh and at some point today we as a family need to grieve...AGAIN.


Julie said...

I am so sorry to hear this about Eli. I can't even imagine what you and your family are going thru. Please know that you guys are in our prayers.

Jodi said...

Heather - so sorry you are going through this. I will be praying that Eli's brain stem test reveals that he still has some hearing left.
I think you are right - the doctors are missing something. Keep pushing for your little guy, you are doing a wonderful job.
I will continue to pray the doctors find something quickly so the best treatment for Eli can be determined.
Also, good luck with getting Eli's new pump and backpack. There is no reason that Eli needs a backpack as big as him - good for you for pushing for a smaller one. Sometimes we really have to fight for our little one's!!!!
Keep up the great work and stay strong - you are a great mom.
I would love to post your blog on my list of blog's and vise versa. Hopefully linking blogs helps spread the word of feeding tube awareness and prayers for our little one's.


ejbaemommy said...

Jodi I'm adding your blog to my blog list right now! I am definitely in agreement that we need to spread the word!!!