Wednesday, August 22, 2012


Peyton's bronchoscopy will be at 7:30am on Friday this week.  Since she is not 100%, as I mentioned previously, the pulmonologist does not want her to have the heart cath at the same time.  It is just the bronch.

Peyton's IV meds ended late last night.  Around 4am this morning, she was fussing and it woke me up.  I was shocked to see that her heart rate was 177!!  While asleep, it's generally 85-95ish.  She had a bit of a fever.  I emailed the pulmonary clinic here this morning.  Throughout the day, she was not feverish, but her heart rate continued to be between the 130s-150s (usually one-teens while awake).  We aren't sure what's going on.  Apparently a her hemoglobin and hematocrit were really low before we went to Boston.  She was also more anemic than usual.  However, nothing was suggested to us as something to do for this.  I don't know what the numbers were or how low was "really low".  The antibiotics for so long might be to blame for this.  Or she's still sick. Or both.

We just aren't sure what's going on.  She is definitely not better.  She's not the worst I've ever seen her - not by a long shot.  But she's definitely not well.  It's clear that these antibiotics, even the hard core IV antibiotics, just aren't cutting it.  It is possible that she may be admitted if she continues to get worse. The nurse in the pulmonary clinic suggested this might happen.   I am not sure if or when this would happen, but I'm almost thinking it's a possibility Friday - but I haven't been told that.  It's just a feeling I have if she is not any better.

I just feel so badly for Peyton.  She can't seem to catch a break.  So far, she has not begun school.  She is on homebound, so they come to her.  But it's just as well.  Her daily routine right now leaves absolutely no room for anything additional.  I have no idea how we'll fit this in when it does start!

Anyway if you could pray for Peyton we would very much appreciate it.

Thank you!  I will keep you posted! 

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