Thursday, September 8, 2011

Home Again

I must apologize.  Peyton wound up in the hospital overnight when her GJ tube came out last Sunday evening.  I had said that they weren't sure (at the time) if it could even be replaced on Monday, being that it was Labor Day.  Well, after much waiting...and more waiting...they finally decided it COULD be done.  She had a new GJ tube put in late Monday morning.  Then we waited...and waited...and waited...and then waited some more.  And then we waited and finally about 4 hours after the procedure, they finally got the orders to start her feeds up.  Then she had to be monitored for an hour.  THEN we got to come home.  We wound up getting home a little after 7pm on Monday.  INSANE.'s fixed.

It's been a relatively calm week since then.  Today Peyton finished up the antibiotics that the Pulmonary doctor put her on a couple weeks ago.  I don't see that the antibiotics did anything at all except give her horrible diarrhea.

Please pray for us, particularly this Sunday as we begin the further reduced nursing schedule of 40 hours a week.  I can't believe just a couple months ago we had 84 hours a week.  Medicaid will soon come to find out what a horrible mistake they made when she starts winding up back in and out of the hospital with regularity.  Sigh.

That's about all the news here for now.

Monday, September 5, 2011

A Week Or So of Updates

Fortunately, there's not tons to report but a few things have happened in the past week or so.

The week before last, Peyton saw the Pulmonary doctor.  We're still concerned about the junkiness she has.  The doctor has her back on an antibiotic which will last for another week.  Oh joy.  She still sounds just as junky.

Last week we met with the Geneticist to go over results from the test that had been done when Peyton was in the hospital back in July - the on that might indicate whether or not Peyton might have a specific form of Muscular Dystrophy.  No news.  The first part of the test showed nothing.  The second part will take another 6 weeks.  Great.

I had surgery on my elbow on the 26th, making me unable to lift Peyton.  Our nursing hours were set to decrease to 40 hours but we managed to hang on to the paltry 56 hours we were given through 9/10/11.  THEN they drop to 40.  I'm not happy.  She had 84 hours a week in June then was cut back to 70 in July and then a few weeks later down to 56s and now it's about to be 40!  It's HORRIBLE. Read up on that situation over on my blog here:

And, last but not least, Peyton is in the hospital.  Oh joy.  Her whole GJ tube came out early last night.  She was admitted because it was Sunday and no one from interventional radiology is in on the weekend and they weren't paging them to come in either.  I should say, they spoke with IR, but they weren't coming in!!  We were very concerned about her being able to have it done at all even today because it's Labor Day!  Good news - she's about to have it fixed.  

What a week.