Monday, December 3, 2012

Back to business

I didn't quite figure out a cost-free solution to the blog yet.  It's a fairly nominal fee that Google charges per month, but I never intended this to be something that cost me money.  The few solutions for free storage involved several more steps to upload photos than the minimal amount of time I have to devote to it.  We may look into switching to a Wordpress blog after the holidays, but that would likely cost me money for the switch and to buy a domain name.  Again, costs I'm not really interested in at this time.  For now, we are paying by the month to keep it up until Gray and I can determine the best solution for us.  I finally posted those Thanksgiving photos.  There aren't many, but be sure to check them out below anyway.

Besides the photos, I have obviously been putting off a post about Keegan for some time.  The reason is two-fold.  First, I didn't want to "upset the apple cart" or "bring on bad karma" by posting that Keegan was stable and doing well at home.  Since Keegan's birth, we always start feeling the nerves when he's been home around 8 weeks.  That's when the routine starts to settle in, you start to get a little a too comfortable, and the dread that something is about to happen begins.  I hate to say it but the inpatient/outpatient back-and-forth has become our "normal", and it can be a bit hard to believe when we are home for longer stretches.  (I promise I didn't have all my toes crossed just writing that out.  No, totally did.)  Especially with Christmas fast approaching, I don't want to jinx anything at all!

Second, I was trying to wait until we had all the pending information back before saying anything at all.  It's very difficult to update about Keegan when half of the puzzle pieces are still missing.  That being said, I understand it's been too long without a substantive update, and I will do my best to bring the lil' blog up to speed.  In the last few weeks, the short answer is that Keegan really is remarkably stable at this time.  He is still maxed out on his anakinra twice a day.  We haven't been able to reduce his steroids in the last two months, and I'm not sure we will be able to soon.  Every time we think we will be able to try another 1mg reduction, his ferritin creeps up/nose starts running/Audrey's sick, etc.  This routine seems to be working though, and while we haven't necessarily made "progress" medically, he is doing ok where he is.

The best analogy I have heard for this moment in time is that we don't necessarily have a direction in which we are steering Keegan's ship at this time.  We are just trying to keep the boat from capsizing while we wait out the rest of the labs and are able to make more well-informed decisions.

We got one big piece of information back recently.  Keegan does not have SCID (severe combined immune deficiency).  This is great news!  However, it was the last named diagnosis with a treatment protocol on our list.  We should get back the test results for defects/mutations on the TBX1 arm of the 22nd chromosome.  Even if something is detected there, however, it will purely be conjecture to tie it to anything else going on.  We are understandably relieved and happy that the SCID test was negative, but it also brings a bit of disappointment that any decision we make next will be more guesswork as to what is wrong with our precious boy.  The last test that we are waiting on is the rheumatology team's breakdown of Keegan's immune response to see if the anakinra is successfully reducing the amount of IL-1 in Keegan's body.  If it is, we can look to stronger IL-1 medications (although they have some prohibitive side effects); if it is not, we are again at square one. Once these two tests are back, we will meet with the entire team of doctors again to make a plan.  As you can see, the fog has not cleared enough to steer Keegan's ship in one direction or another.  We can only hope to keep it upright as we wait for more guidance.

In the meantime, Keegan is working hard in all his therapy sessions and making some good progress.  Honestly, our hope is that we maintain this status quo for just a few more weeks to get through the holiday.  I'm trying to get in that merry spirit, but I have to admit, it is hard when you feel like a bomb may drop any minute.

Thank you for your continued dedication and love for our little family.  I can't tell you how much you inspire me to keep going and doing.  Please keep Keegan covered in prayer at this time, as he battles a runny nose and some tummy issues.  We just want to be home together for Christmas!  Thanks again.

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