Friday, May 6, 2011


So, you may have noticed via our twitter feed or FB updates that Keegan has been inpatient since last night because of an issue with his port.  I will try to make a very long story short.  We've been having some issues on and off with Keegan's port for about a month now. 

Wednesday evening before bed, however, we discovered this:

By the time we got him to the ER per our medical team's instructions, the whole dressing was covered in blood.  It took a lot of work from the hem/onc nurses, but we went home.  The line worked with his TPN overnight and through the morning.  But by bathtime yesterday, there was more blood, and we had to pull that needle out too.

We were told to go back to the ER...again.  At that point, no one was comfortable running TPN through it, and surgery said they needed to see him.  We can troubleshoot a line as best as we can from the outside, but surgery has "ownership" of the line as the ones who put them in and take them out.  Of course, that has to be downtown, not at the Legacy campus.  Since Keegan's body is dependent on the TPN, his electrolyte, vitamin, and blood sugar levels started to get very low.  We put a temporary IV in his arm to run a glucose drip with some extra vitamins.  Then he took his 12th ambulance ride to be admitted downtown.  By 2am, we were cozy back on the floor with his "girlfriends."

We came in to support his nutritional needs while his line was not working and obviously, to fix the problem with his port.  We ran a few tests, including a dye study and an echo, over the course of the day but had increasing problems with it all day long.  Surgery finally showed up about 20 minutes ago.  Per the tests run today, the port is intact and in the proper place.  The surgical team wants to try a few more things tonight and call the hematology/oncology team in the morning for more help.  If we still are not satisfied with its performance, we will discuss taking him into surgery to troubleshoot or replace the line. 

In the meantime, today his blood levels dropped unexpectedly.  We will redraw labs tomorrow.  Please pray this is a temporary issue and not indicative of something bigger.  As always, we appreciate your prayers for safety and healing for our Bug.  We did get a few tidbits of information from his biopsies today, but we are hoping the results from the electron microscope will be back by Monday to shed some better light on what we've seen.  More tomorrow as we learn it.  Thank you again.

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