Wednesday, April 27, 2011

Here we go

Keegan was admitted to the hospital just after lunctime today to prepare him for his upper endoscopy and colonoscopy tomorrow.  In an attempt to provide a better picture of his colon, he is being given a solution through his g-tube to "clean him out."  This needed to be done in an inpatient setting due to his renal problems and TPN-dependency.  His doctors wanted to be able to monitor him closely through this process.  As much as we didn't want to be inpatient, we certainly wanted to not create a bigger problem or have to delay the test any longer.

We stopped his minimal tube feeds around 4pm and started the Go-Lytely around 5pm.  As was expected with Keegan, it didn't take long to start working and well frankly, it hasn't stopped.  He doesn't have any formed stool in him, nor does he really get any substantive amount of formula throughout the day (around 220cc or a little over 7 ounces per day).  We didn't think it would take that long to finish it up, considering those two things.  We were wrong.  Still going.  It's not entirely surprising for Keegan.  His system always seems to be in overdrive, producing something when nothing is there.  We've seen that since the beginning.

Poor buddy.  His little bottom is raw, and his belly is enormous.  They have to run the solution at an extremely high rate, which he is absolutely not used to having in his system.  Thank God, he hasn't thrown it up.  That would be the only thing worse than this right now.  We are praying that by midnight, the desired effect will have been reached, and he can have a break the rest of the night.

Keegan is scheduled for these procedures and biopsies tomorrow around 12:30pm.  Hopefully, he won't get bumped on the schedule.  We are hoping to have initial results on the biopsies by the beginning of next week.  The electron microscopy will take several more weeks.  We will start working on a trip to either Boston or Cincinnati late next week once initial results are back with the anticipation of travelling within the next two to three weeks.  I'm not holding out much hope that we will learn anything from these tests whatsoever.  We never do.  Even when he is falling apart clinically, the tests never show us anything definitive.  I suppose one can always hope for a miracle.  I hate to admit that I have pretty much given up on that though.

For the ump-teenth time, we appreciate your prayers and support for our Bug so very much.  We will update with more news tomorrow.  It's going to be a long night here.  Hope everyone else out there is able to get some sleep!

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