Update 9/9/10

I wish that I had some really awesome news to share today.  The past couple of days have been tough.  I blew another round of PFT’s on Tuesday-they were around 36% (I was hoping for mid to high 40’s). So progress is slow in coming.  It is a real possibility that this will be at least another week or so.  Both DH and I have been quiet, just getting our brains around what is happening, exploring possibilities, thinking through everything to be sure we aren’t missing something obvious or not doing something that we should be doing.

My regular CF doc does not return until Monday so we really don’t anticipate any changes until then.  At that point, we hope to ask about what they are thinking and what that means for the days and weeks ahead. 

I also had some port excitement over the weekend.  Sunday we were unable to get any blood return.  Stuff was going through just fine but they couldn’t get a drawback.  So, Tuesday afternoon was spent down in I.R. (interventional radiology) to confirm that the line was still viable, that there were no clots or problems.  There was a fibrous sheath that had grown over the end of the line.  They were able to hook me up to a slow 1 hr drip of a med that would clean that out.  Took another look after the drip finished and stuff looked good.  Big sigh of relief-I was not looking forward to having to replace the port if necessary.

The oxygen component has not really changed. I had tried to push for them to reduce it down to 2 1/2 ltrs.  but it resulted in extra stress on my body.  Last night was a point of decision for me not fight this-back up to 3 ltrs. and let my body use the energy to fight the bugs rather than fighting to get air.

What fun it was to have some visitors yesterday!  Thanks guys for stopping by.  I LOVE all the notes of encouragement and goodies.  Also added more cards to my card wall.  Whohooo-it continues to give opportunities to share about my faith family and those who are so faithfully praying.

Today was a quiet, low key day.  The goal was some more sleep.  Goal accomplished-several naps later!  Got out and about with DH downstairs and a game of nerf ball catch in the room all made for a just right Thursday.