September 28, 2012

It's a bad food day

  Sadie seems to have these days where she can't seem to handle her food.  Today is one of those days.  Since she is tube fed her eating patterns are the same everyday.  She gets 5 feeds a day, 3 hours apart, same amount and put in her body at the same speed (it's on a pump), and the same formula.  This does not change.  She can't eat solids yet, so that isn't the issue Why some days this seems to be an issue is beyond me.  The only thing that we (parents, Dr's, and therapists) can come up with is that it could be part of the mito disease, because mito can cause gastrointestinal issues. We think that some days she just has slow gastric emptying.  So we cut her food amount in half and increase the time between feeds (the "back up plan"). As long as we get in the complete amount of calories in a 24 hr period, we are good.
  How do I know the days she can't handle it? She starts dry heaving... over, and over and over.  Since she had the nissin done on her stomach, she can no longer throw up.  So she dry heaves and produces a lot of saliva.  It's so sad to watch.  But at least we know what to do now.  When she first got the nissin done, she would dry heave and we didn't know why. Nobody I talked to seem to have a clue.  So (once again) I was left on my own to figure things out.  One day a light bulb went off above my head that said to try burping her.  Well you can't burp her the same way you do a typical baby.  You have to hook her up to a tube and put a syringe on the end and then she pushes the air out of her belly.  This was our solution.  It worked!  She gagged all the time because she needed to burp.  I was so happy we fixed the problem.  Then it stopped working one day.  And I thought great, now what is the problem.  That's when we discovered that she couldn't handle her food and needed to throw up (she throws up the same way as she burps) and had to come up with the "back up plan".  The back up plan works great.
  Even though we have figured out the problems and I'm thankful that we know what to do for her and have come up with her "back up plan", I wish she just didn't have to go through all this.  It breaks my heart.

On a happier note, it's Chloe's 5th birthday.  She was allowed to get her ears pierced.  No tears, she was so brave.  I seriously can't believe that 5 years ago I became a mom.  It has been the best 5 yrs of my life.  I wish I knew how to put pics on here from my phone.

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