Wednesday, June 12, 2013


I guess I spoke too soon.  Will I ever learn?

When I went into Keegan's room to get him up yesterday , I found that he had chewed through his TPN line.  Yes, chewed through it.  Didn't break it all the way, but it looked like a puppy had gotten to it.  Enough damage was done to open the line and allow it to leak.  Did I mention that Keegan isn't sleeping hardly at all right now?  Maybe a few hours a night.  It's taking a toll on all of us, needless to say.  At some point during the night, he must have decided to take it out on his line.  Unfortunately, that line was running TPN straight into his bloodstream and possibly could have carried any bacteria from his mouth with it.  

We were already planning on repeating his labs yesterday and running some blood cultures from his central line too, even though the fever had passed.  We needed to recheck a few numbers before his regularly scheduled rheumatology appointment today.  We told the team about the line chewing incident and silently prayed it wouldn't amount to anything.  His labs looked a little better than last Friday, and we went about our day, knowing the blood culture was "cooking" but hopefully would be negative.  

This morning, we got up bright and early.  I took both kids with me to Scottish Rite for Keegan's rheumatology appointment.  It went well, and we were just wrapping up when I noticed Keegan hanging up on someone who kept calling on my cell phone.  It was the GI nurse calling to say the blood culture had grown back positive for yeast.  I grabbed the rheumatologist and put her on the line.  She convinced transplant and GI to repeat the labs and cultures and send us home, since he looked ok and had decent vital signs.  

So we headed over to the transplant clinic at Children's to have the labs and cultures drawn.  The attending physicians all came in.  We discussed the course of events since the weekend and agreed that we would bypass the ER and come straight to admitting if developed a fever overnight.  By that time, it was 1:30pm, and the kids were desperate for lunch.  I fed them in the cafe downstairs.  After potty breaks and a few minutes watching the trains while I updated Gray by phone (who had left early that morning to go out of town for work), Audrey declared she needed to go back to the potty.  We got that taken care of and were walking out of the bathroom to head out to the parking garage when the phone rang again.  The Infectious Disease attending had decided Keegan needed to be admitted for prophylactic antifungals through the line while the new cultures were pending.

And here we are.  Admitted on the cardiac floor.  He still hasn't spiked another fever, and there is the kicker in all this.  Yeast is dangerous, dangerous stuff in a central line.  Yeast is very dangerous to all transplant patients but especially for those with an IV tunneled directly into their hearts.  It's also usually very fast-acting and result in a very sick kid, very quickly.  So far, we haven't seen that with him.  Although his heart rate has crept up slowly over the course of the evening, so maybe we accidentally caught it early.  Only time will tell.

For now, we appreciate every prayer and bit of love you can through Keegan's way.  I promise to update as we know more, but we are praying it was just a contaminate that will let us come home within 48 hours.  Thank you so much for joining us in that prayer.

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