Update

Peyton is doing well after the events of 4/8/11 which I wrote about on 4/9/11.  We have periodic concerns about the tube and whether or not something happened to it internally, but she is acting fine.  I never did hear back from the hospital regarding my complaint.  I will be contacting them to see if they're even doing anything about it.  I did hear back from the PA in surgery and she spoke to the surgeon.  His response was that if we wind up back in the ER with tube issues, tell the nurses to page both of them.

Peyton saw her Neurologist today.  It was a lengthy visit where the doctor spoke a whole lot about a lot of stuff.  We didn't really come out of there having learned anything new, but it was a good opportunity for him to assess her current situation.  He's very pleased that she's been out of the hospital for as long as she has been (since mid-November!!).  He's always thinking, so he will continue to think and see if he can come up with some ideas on how to proceed.  The problem is that there are so many issues with her, it's hard to say where some things are stemming from.  Is her physical regression a result of decline in overall health?  A result of her neurological impairments?  Are those impairments worsening?  Is there another underlying problem?  He'll see her back in six months.

I spoke with the nurse practitioner in the Pulmonary clinic today.  Peyton's had thrush in her mouth for 8+ weeks now.   She's had two courses of oral Nystatin.  That was followed by a course of Diflucan.  None of these worked, so the NP spoke with the doctor, who wound up contacting a doctor in Infectious Disease.  Remember, Peyton has been on so many antibiotics for over a year now, but has been on continuous antibiotics since February 2nd for the mycobacterium which was found in her lungs.  She will continue on those antibiotics for some time.  As a result of all the antibiotics, she's had thrush now for well over 8 weeks and it's not responding to meds.  The ID doctor recommended another round of Diflucan, but a stronger form.  Finally her tongue started to look much better.  Not normal, but much better - if you'd have seen it at its worst, you'd be amazed at how it looks now.  As that course of antibiotics was winding up last week, I contacted the Pulmonary nurse practitioner to find out what we should do since it wasn't completely gone.  Another round of the higher strength Diflucan was prescribed.  We're now a few days into another 2 week course of antibiotics.  We'll see what happens.

When the nurse spoke with the doctor in ID, he suggested that perhaps we bring Peyton in to see him in the Infectious Diseases clinic.  This makes sense - she's had this mycobacterium for so long, plus this seemingly incurable thrush, plus the fact that they actually found some yeast (aka thrush) in her lungs when she had that bronchoscopy a few months back.  We see this doctor in mid-May.  I think we actually saw him once when she was in the hospital, so he's not completely unfamiliar to us.  Although, I'm sure he was in complete "precautions" get up (gown, mask, gloves) when Peyton was in the hospital, so I couldn't tell you what he looks like!

That's about all that's new tonight.  Praying that Peyton's tube issues have resolved.  Praying for the thrush to finally go away.  Praying that someone, someday may have some answers regarding all of Peyton's issues.