Thursday, January 13, 2011


Yesterday we received some results from the endoscopy that Peyton had last week.  The nurse practitioner from the Gastroenterologist (GI doc from now on!!) called me with some information.  Whatever samples they took during the procedure indicated that she is definitely having reflux issues again.  She's been on Prevacid since about November, but the dose was doubled a few weeks ago.  She's also been on Zantac for a month or two.  Even still, she's showing that reflux is a problem.  So, to try to help the situation, the doctor has changed her from 15 mg of Prevacid twice a day to 20 mg of Nexium once a day.  We'll also take her off the Zantac in a couple weeks.  It takes a couple weeks for the Nexium to kick in, so the Zantac will cover her during the transition.

The results of bloodwork done showed that her hemoglobin and hematocrit levels are low, but they are at least consistent with where they've been over the past few months.  Thankfully not so low as to require a transfusion.  I guess it was getting pretty close a couple months ago.  Thank you God for sparing her from that!  She's not had one yet and hopefully doesn't ever!

In addition, her iron is low.  Normal is between 50-170.  Hers was 14.  She's now taking iron to help that.

As I mentioned in the last post, the endoscopy showed that her Nissen Fundoplication surgery that was done in September 2009 has come undone.  I'm not sure if it's all the way undone or just very relaxed so as to be completely non-functioning.  I don't suppose it matters much since it's not functioning either way!  This surgery was to prevent reflux and the vomiting that was so horrible at that time.  She's also aspirating (secretions going into her lungs and not down her esophagus).  Presumably, if she's refluxing, then what goes up has the potential to also go down the wrong way.  This could be dangerous for her.  I emailed the physician's assistant in the surgeon's office last week regarding this because I wanted to know what they would want to do for Peyton.  On the one hand, I don't want to put her through another Nissen surgery - it's about 4 hours and is an open surgery.  The scar on her belly (running up and down, not across) from the surgery is at least 6 inches long.  It's a big deal to put her through this.  On the other hand, I don't want her refluxing and potentially aspirating and winding up with aspiration pneumonia, which is something that could take a bad turn.

I finally heard back from the NP in the surgeon's office today.  She sent my email to the surgeon.  His opinion is that in Peyton's case, re-doing her Nissen is absolutely warranted.  That said, he does not want to do it because of her overall condition.  No surgery.  Now, the fact is that she isn't having the trach surgery that was recommended by the ENT because that is OUR choice.  WE made that decision in Peyton's best interests.  However, this is the first time a doctor has stated to us that he didn't believe a recommended treatment was in Peyton's best interest.  That's a tough one to swallow.  At the same time, though, I trust his judgment and feel comfortable that he is doing what is best for Peyton.

I haven't gotten word on any results from the bronchoscopy - the doctor took cultures to see if whatever bacteria is plaguing Peyton can be identified in order to be treated properly.  I can't even begin to tell you how many antibiotics Peyton has been on - regular antibiotics, really heavy duty "oral" antibiotics (though those go through her g-j tube), regular IV antibiotics, stronger IV antibiotics.  She's been on nearly everything at this point!

Right now I am really believing God for an end to the respiratory issues that have been plaguing Peyton for over a year now, as well as the more recent gastrointestinal issues.  I know He can heal her.

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