Sunday, March 20, 2011


After yesterday's set-back, the decision was made today to hold Keegan's tube feeds at 10cc/hour for the next few days.  It will take another variable out of the overall equation, so we should have a better idea how the drugs are/aren't helping him.  The more things we change everyday, the harder it is to tell what is hurting or helping.  Hopefully, holding his feeds steady at a very, very small rate will put less stress on his GI tract and give him more time to heal.  Advancing his feeds should be easier once his tummy is more ready to deal with the increased volume and calories.  It is fairly evident that at this point in time, his intestines just simply aren't ready for the job.  I use the word "should" cautiously here, as absolutely anything is possible with Keegan.  All that being said, today he had less overall output, but we have yet to see any improvement in "quality".  Less output is a step forward though, so we will certainly take that.  I am hoping that by tomorrow or Tuesday we will have more of a plan for where to go from here.  At the moment, we are taking each day as it comes and waiting for signs that Keegan has healed enough to go forward.  I would anticipate that once we feel comfortable advancing his feeds again, we will go home once he is down to 12 hours of TPN again.

The IVIG has at least worked to give his bone marrow a boost.  Still neutropenic but climbing.  Full labs will be drawn tomorrow, so we'll have a better idea how his kidney is acting.  We will also resend off stool cultures for the rotavirus and c-diff to see if at day 12 of the virus/day 8 of the anti-parisitic/day 3 of the IVIG has changed anything.

Other than that, it was another day of trying to entertain Keegan in his room during his energy spurts (still nowhere near 100% but just enough to be too much for this little room).  So, today we broke out the window markers, and let him decorate the room.

This kid never ceases to amaze me.  To see that smile from the simple pleasure of coloring on the window after all he's been through, makes my heart burst with pride and love, even if it's tinged with a hint of sadness and disappointment that this is his life.  He sure makes it easier to endure the trials.  And so do your continued prayers for his strength and health.  Thank you is so much less than y'all deserve! 

1 comment:

Julie said...

Window markers, such a neat idea and so good for the kids. Seeing his smile is such a blessing, please know that all of your are in my prayers.