Wednesday, April 6, 2011

In the moment

That pretty much sums up how our days have been lately.  Living in the moment and trying to get through each day.  There is no getting ahead at this point.  My only sense of accomplishment each day is if I don't end up feeling as if I've actually lost ground.

And it's not going to get any better in the next few days.  Keegan has his transplant cardiology appointment tomorrow.  He will have the standard testing - labs, EKG, chest xray, echo, etc.  But the big kicker is that we are anticipating the team will order the switch to the last available oral immunosuppression medication, in combination with steroids.  It could go absolutely fine, but it could also end up being an epic fail.  This particular medication, rapamune, is known for oral ulcers and GI complications.  If you're going to have either of these side effects, they generally manifest within the first 48 hours.  Steroids are hard on your GI system too.  And Keegan is the furthest thing from being in a good place from a GI standpoint than I could possibly imagine.  But we know we have to try this last combination.  What happens if Keegan can't tolerate this drug is yet to be determined.

As if Keegan's beyond suppressed immune system needed another challenge, it appears I picked up some kind of viral runny nose/congestion combo at the hospital while inpatient last week.  Audrey started suffering with it on Sunday night, but neither she nor I really suffered.  It has been more of a nuisance to us.  Keegan's nose started running just this morning.  He's been in bed for less than three hours, and he can hardly breathe.  Most nights between wake-ups, pumps, and diapers, I sleep on average of 3 to 4 hours.  Looking like less than that tonight and an extremely early morning to make it to downtown Dallas by 8am.  Sigh.

So, please keep Keegan and our family in your prayers the rest of this week, if you would be so kind.  We are going to need all the patience and strength we can get to get through Keegan's normal issues, his illness, and this med change.  I know I keep promising that I will write a more in-depth update about how things are going.  I hope that the very title of this update hints that I just don't have the energy to go into detail about it all right now.  I think I'm partly guarding myself from it.  If I don't put it down in writing, I can avoid it all for a little longer.  So, grant me a little more time for that deeper, reflective post.  We truly are living in the moment and getting through each day.  Not having a long-term plan for Keegan's care makes that even more difficult to come to grips with.  But for now, we are trudging onward, enjoying the highlights each day brings and depending on each other to get through the challenges.  Thank you for hanging on with us through this season of our lives.  We appreciate your prayers and support so much more than you know. 


I consider that our present sufferings are not worth comparing with the glory
that will be revealed in us.
Romans 8:18


1 comment:

Julie said...

Maddie, prayers being said for you all. You have amazing strength and endurance, God is holding you in his hands.

Julie