Saturday, November 5, 2011

Day 2

Keegan is still inpatient.  He spiked another fever this morning, but once again, it broke on it's own.  He ate a little more today and seemed to be feeling pretty good until dinner time.  He refused to eat all but a few bites and got a little sick right before bed.  Then, he lost everything he had and then some around 9pm.  As of right now, he has stayed asleep but is moaning and taking big breaths like he is still feeling nauseous.

His labs were a bit of up and down.  His kidney function was better, CRP down a hair, but his blood counts each took a pretty big dip (white, red, and especially platelets).  The one level that should tell us if this is truly the beginning of another HLH/MAS flare won't be back until Monday!!  The lab gave some song and dance about not having the personnel or equipment to run it except during the week.  This was a level that we would have in a few hours in Boston.  It is THE key part of his diagnosis and tells us if we have to repeat the steroid pulse and/or turn to chemo to treat.  The fact that it "can't be run on the weekend" here is horrifying.  We saw it go from slightly elevated to taking a big jump to leaping to staggering levels in a matter of 4 days.  There's not much I can do about it this weekend.  If he is trending the wrong direction, I don't feel like it's going as quickly as it did before.  This is a problem we will definitely have to discuss with the team and plan for in the future.  Because it is highly unlikely that Keegan is going to only get sick Monday thru Thursday for the rest of his life.  I just don't understand how a pediatric hospital this big can be incapable of running a very important, life-threatening lab on the weekend.

As of this morning, it sounded like if he did well today and overnight and if labs were ok tomorrow, we could go home.  I didn't ask what would happen if the labs we can draw stayed the same, but he started throwing up again or spiked another fever.  We will have to discuss that in the morning.  In the meantime, the bug finally caught up with Gray.  Since Audrey was the instigator and already was exposed, she is still with him at home.  I think he's getting a little taste of the "moms aren't allowed to be sick" idea being alone with an active toddler while feeling crummy.  He should be doing much better by tomorrow, and thankfully, our families will be coming back into town tomorrow, which will definitely be a little relief.

I have a feeling tonight is not going to be as smooth as I was hoping.  Thank you for your continued prayers for our family.  You truly do make a difference and help us keep up the fight.

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