Monday, July 16, 2012

Back in a bit

I'm going to have to take a break from the blog for a little bit.

The first reason is a technical one.  We are mostly staying with my parents this week because we are finally, finally having the majority of the inside of our house painted.  It took two years, but we were able to get the house refinanced.  Big relief there.  Since we had one "grace" mortgage payment, we were able to get some major wall and ceiling cracks and broken floor tiles fixed with some fresh paint too.  It's a small thing in helping our house that could really just use an Extreme Makeover, but it's a start.  A way, way overdue start.

The second reason is a mental one.  I just need a break.  That is probably painfully obvious from the lack of posts, especially those with any actually merit.  I've been dancing around it, but I'm just going to go ahead and mainly step away for a week or so while I process some stuff.  Stuff.  Deep, I know.  Putting off a hiatus has just made me dread posting updates even more.  This journey has a lot of ups and downs.  Unfortunately, I'm just in a down right now.  It's rather ironic that the personal downs tend to crop up when Keegan's health is somewhat stable.  I guess that's when I finally have time to let it hit me.

We anticipate Keegan's remaining major genetic labwork will be back in the next week or two.  Hopefully when I return, we will have some news to share on that front also.  Thank you so much for bearing with me through this time.  If something comes up, we will be sure to let you know.  Until then and as always, we appreciate every prayer for Keegan's health and safety.

Sunday, July 8, 2012

Chihuly

The day before my gallbladder surgery we made a trip to the Arboretum to see the Chihuly exhibit.  I would gush emphatically about the artwork, but I think that I'd rather just let it speak for itself.



















Wednesday, July 4, 2012

A little bug

Keegan isn't a fan of holidays, it seems.  He starting throwing up yesterday afternoon.  He finally got a break and some sleep around 2am.  Looks like a little stomach bug.

This threw a wrench into our hopes for a relaxing, fun Independence Day.  Audrey was able to get some swim time in, but Keegan has been feeling pretty crummy, staying on the couch all day.  So far, he has not spiked a fever, but viruses almost always cause a flare of his Macrophage Activation Syndrome.  So we are just waiting to see what he will do.

That's the hardest part.  Waiting for the fall.

It is 6:30pm now, so I think we will escape an inpatient stay for the 4th.  An improvement over last year at least!  We will be sure to update as soon as things change.  Thank you so much for your continued prayers for Keegan.  We honestly appreciate it so much more than you know.

Sunday, July 1, 2012

Still working on it

Still trying to find some time (and brain power) to write a real, well-written, thought out update here.  I didn't want to leave anyone who may actually still be following this little blog hanging.

First, Audrey is fully recovered.  It seemed to be a less-than 24 hour bug but took my mom down with her.  Second, Keegan seemed to escape the tummy bug so far.  His transplant appointment went well.  His beautiful angel heart is doing wonderfully.  The other things discussed at the appointment are still dependent on the remaining genetic and research labs that are pending.  We meet with his rheumatologist tomorrow and may know more.  It could be up to two more weeks before all is said and done.  Although Keegan's labs have remained stable, he is showing us some signs at home that have us on the edge of our seat.  When aren't we with him, though?  I promise more information will follow soon as we know it.

Lastly, I am doing ok in my recovery.  Not quite two weeks post-surgery.  If you follow our tweets over there on the right sidebar, you may have noticed I had a slight complication the day of and barely made it home around 9pm.  I guess my body was not quite ready to wake up when I was extubated in the OR, and my heartrate dropped dangerously low.  They gave me a bolus of medication to wake me up, but it happened again in the PACU.  Nothing like waking up and hearing, "get Dr. W now...her heartrate just dropped below 20!"  Great.  They had to give me some more meds, and I was fine.  That made me really dehydrated though.  Pathology on the ol' gallbladder was pretty scary.  Chronic inflammation, a few areas where the tissue had just started to necrotize.  The surgeon said it looked pretty gnarly, and we got it out at just the right time, saving me an emergency removal with much longer recovery.  Thankfully!  I can't run for another week, so I'm a touch antsy.  Don't think I could right now, even though I desperately want to.  Every day is better though, and in a few weeks, I'm sure I'll be feeling 100% better.

That's all for tonight.  So much more work to do.  It just keeps snowballing!  I promise to get to some pictures soon.  We appreciate every prayer for Keegan's appointment tomorrow.  Some really, really big decisions are facing us.  Thank you so much for hanging in there with us!