Friday, March 23, 2012

Inpatient again

Keegan was admitted to the hospital again this morning.  He spiked a fever (103.8) around 3am.  We gave him tylenol, and he was able to sleep until 7am when we were instructed to bring him to the ER downtown.

It has been a rough day all around.  Keegan has handled the actual fever fairly well.  Retching alot but no true vomiting.  The fever has not come below 100 and has peaked at 104.2 throughout the day, so we will be switching to IV tylenol in about an hour.  His labs look like he is reacting to a virus, flare, or the combo of the two.  His ferritin is up; blood counts down.  We still have to culture his central line to rule out a bloodstream infection as the source of the fevers.  It also requires a contemporaneous draw of blood from a peripheral vein, which he hates and is a terrible stick.  Even though he screamed bloody murder, he sat up after it was over and said "aww, thanks everybody."  My sweet boy.

The cultures take 48 hours to "brew" and require that we prophylactically treat him with IV antibiotics until we are sure the cultures are negative.  Until we are sure of that, we can't treat the flare with a steroid pulse.  Steroids help quelch inflammation, but they are like adding gasoline to a fire when there is bacteria present.  So, we will watch his inflammation markers and pulse him as soon as we can if necessary.  In the meantime, we try to treat the fever and keep him comfortable.  They also ran a respiratory virus test to rule out RSV and a bunch of other issues but will mean he is on contact precautions and isolated to his room during these 48 hours.  So fun.

Feeling really crummy in the ER

Then there were the unexpected wrenches thrown in the day.  He has a biopatch under his port needle, a piece of treated antimicrobal foam that we just started using this week to pad his skin where he was having some irritation.  Overnight, the patch blew up and turned yellow like it was saturated with something.  Wound care team thinks he was having an allergic reaction to the bio patch, and the skin underneath it when we pulled his needle seemed to support that theory.  Obviously, that meant we had to reaccess him, and it took a few tries, i.e. big needle sticks into his chest, to get it right.

To add insult to injury, we went to give him oral tylenol through his g-button while in the ER only to find his button would not flush, draw, or anything at all.  Completely and utterly clogged with magnesium build-up from this morning or even from weeks of the stuff.  Keegan uses a specialty g-button that is not kept in distribution in the hospital.  We couldn't even get the right size of a more standard g-button.  So, we had to get creative.  We pulled his current g-button.  (Imagine a big earring stuck through your abdomen, directly into your stomach.)  Stuck a foley catheter into the hole to prevent it from clogging.  Rinsed, pushed, and pulled on the button until we got it cleared.  Realized we didn't have a guide bar to stabilize for reinsertion but managed to slip a weighted ng tube through it and get it back in place.

By this time, Keegan had just about had it.  His fever came roaring to a head, and he finally passed out asleep.  IV tylenol is running as we speak.  We are praying he is able to sleep comfortably enough through the night to feel better tomorrow.  Right now, our biggest prayer request is that this is truly a flare and not a line infection.  Flares are nothing to laugh at, but at least we can treat them and know what we are facing.  Keegan cannot afford to lose his central line to an infection, nor does he have the immune system to fight one at this time.

More information as we learn it.  Thank you so very much for praying for our Bug.  He means the world to us, and we absolutely hate to see him in pain yet again.  We are inpatient at an absolute minimum until Sunday afternoon if he doesn't have a line infection and doesn't have an MAS flare.  In all reality though, it will probably be a week of pulsing him with steroids and trying to beat back a flare, just to have to renew the discussion of whether or not we should be pulling out bigger guns to stop these from happening.  For now, we wait.  Thank you so much for joining us again on this journey.