Sunday, November 13, 2011

Update...kinda

I honestly have no idea what to title these posts anymore.

As anyone who has read this blog for any piece of time has probably noticed, I am not really in the blogging/journaling "mood", as it were, lately.  There are a variety of reasons.  None of which I really feel like addressing tonight.  Actually, that's probably a good enough description of why I haven't been writing much.  I don't really feel like addressing any of it.  It's a cycle, ya know.  It's sometimes difficult enough to live it.  I don't always feel like hashing it out in the written word at the end of the day.

All that cryptic nonsense aside, Keegan seems pretty stable to the naked eye.  That's really one of the more disturbing pieces of all this.  A child with a ferritin level of 15,000 shouldn't be ambulatory, let alone playing and acting mostly "ok".  So the fact that he is home and looking about the same has us a little unsettled, to say the least.  We have given him a double dose of anakinra all weekend.  We will go in bright and early for labs in the morning.  Fingers crossed.  He can't stay on the double dose more than for this weekend, so we are praying it worked.  What will work from here on out is anyone's guess.

Literally.  I don't think anyone has an idea of what his long-term maintenance looks like at this point.  Simply maddening for a type-A, planning personality like me.

Keegan is still very tired, is eating minimally at best, and having worsening diapers.  He really seemed to feel cruddy all weekend long.  I won't be surprised if his inflammation levels have come down with the extra meds, but what does that mean for my ability to monitor him closely enough for flares at home?  What is even "normal" for this child anymore?  If Tuesday his levels were dangerously high but he acted fairly normally, what on earth are we supposed to think when he actually doesn't act like himself?

Italics are so not enough to do that last question justice.

But I digress.

I do that alot lately.  Sorry.

In summary, I suppose this "update" doesn't tell you much at all.  Keegan stayed home.  We are trying to enjoy it as long as possible.  We will see what the team thinks tomorrow after his labs all come back.  That's about all we can do right now.  I feel like a lot of decisions should be made this week, but I'm not sure they actually will be.  Another week.  Please, Lord, let it be an uneventful one!  More tomorrow...

2 comments:

Jessica said...

Praying for your boy!

Anonymous said...

Girlfriend, you sound frustrated and exhausted. I can't begin to imagine what it is like to be stuck in this seemingly endless cycle where there really is no getting back to normal. Sending prayers for Keegan (of course) but also prayers for you and your husband for strength, patience, peace, and maybe even a little break.