Wednesday, April 23, 2014

Bullet dodged

I still need to update about the Firefly Run, end of both kids' spring soccer seasons, and Easter.  Hopefully, I can tackle each one per night this week to get caught up.  If you happen to follow Keegan via Twitter or FB, you may have noticed that we dodged another line infection bullet last week.  You know, just to keep us on our toes.

On Monday night right before starting to cook dinner, I was putting some things away in the garage and taking out trash.  The kids were watching a movie in the den, and I left the back door open to keep an ear out for them during the few minutes they were out of my sight.  It was less than 10 minutes of sweeping, tidying, and garbage duties and yet evidently still too long to leave Keegan alone with his TPN pump running.  I came in to see him standing in a small pool of blood saying he needed "a wipe".  I saw the blood in his line first, clamped the line, disconnected the pump, and carried him to the bathroom to get cleaned up.  Then, I started finding the wreckage.  Blood saturating my couch (which although is luckily red, still did not come out), on the rug, on the tile, on the leather chair, on his clothes...and around his mouth.  Once again, he had chewed through the line, and as soon as his venous pressure exceeded the pump rate, he started to bleed out.  With blood, it always, always looks worse than it is, and although I've been through this too many times, I still got a little freaked out.

My mom rushed over to take care of Audrey and help the clean up while I sped across the street to the Legacy ER.  Obviously, one concern was how much blood had been lost.  Answer?  Not enough to be concerning.  The biggest concern was whether any bacteria from his mouth had been pumped IN to him before he started to bleed.  So we ran labs, drew blood cultures from the line, and waited on pins and needles for 5 days to see if they would grow anything.  If at any point, day or night all the way until 7pm on the night before Easter, the cultures grew any bugs, it would mean an immediate hospital admission for IV antibiotics and possibly surgery for a new line.  Luckily, that didn't happen, and so far, so good.  He has shown no signs of an adverse reaction to the incident, and we enjoyed a normal Easter together as a family for the first time since 2010.

The big question is what drove him to chew again.  If you recall, he did this in the middle of the night last summer, which is why his pump now runs during the day.  That resulted in a fungal infection that dropped him like a rock and took two weeks and three trips to the OR to get a new line.  We assumed last summer that it was because he woke in the middle of the night and was bored.  Perhaps it was boredom again this time.  We will never know.  Even when his nurse is here, we can't keep eyes on him 24 hours a day.  There will always be a few minutes here and there he could sneak it in his mouth, and he isn't capable of understanding why that's a bad thing.  For now, we are grateful that God was keeping a watchful eye on Keegan, even if I wasn't.  Thank you for continuing to lift him up in prayer, and if you don't mind, a few extra wouldn't hurt until we are truly out of the woods here.  Whew! One more day with Keegan, one more bullet dodged.  Let's just hope we continue to be this lucky!

p.s. Keegan's cultures from the previous ER trip came back positive for a respiratory illness called metapneumovirus.  Evidently, Audrey was misdiagnosed!  It was still a virus, so supporting his symptoms was all we could do.  However, we will say that was also a bullet dodged, as this particular virus can be difficult on immune compromised kids.  Boy, Keegan's guardian angel is working over time lately!

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