Thursday, August 5, 2010

No News Is Ok News

First, let me say the two words I can't say nearly enough - thank you.  Wow, the outpouring of support, prayers, and love in the last few days has been so comforting.  It's nice to know that our friends and family are continuing to lift Keegan up in prayer after all this time.  Thank you also for your comforting words to Gray and me.  We trying our best, and sometimes it gets to us more than we'd like.

Keegan was already scheduled for his normal nephrology appointment this morning.  One of his kidneys is atrophied and has not had any noticeable growth at all.  He has been officially diagnosed with a "solitary kidney" or renal hypoplasia.  It's most likely a result of the renal failure he was in while on ECMO and immediately after his transplant.  The other kidney has been adequately picking up the slack since we got him off of IV nutrition, and there's no immediate problems with it.  We follow-up with nephrology every six months to continually monitor his function.  Unfortunately, his immunosuppression medication that keeps him from rejecting his heart can cause kidney toxicity.  Lucky, huh?  So, this is one more area that we wait and watch.  His nephrologist thought everything looked good on that end today.  He was slightly concerned about his blood pressure but planned to consult with cardiology.  All in all, we hope to not see him again until February!

After nephrology, Keegan had labs, an EKG, and an echo to see what, if anything, was causing his recent issues.  Have you ever heard a funny noise from your car engine and taken it to the shop, only to have them tell you they didn't hear anything or see anything wrong?  Well, I haven't, but that's exactly what happened with Keegan today.  At least nothing new to worry about.  To be honest, that's what I was expecting.  We went through this exact same thing for several months before he went into complete intestinal failure.  You can tell something isn't right, but you have nothing to show for it.  His energy came back up quite a bit today, but he still is not eating well and had some terrible GI issues.  We will continue to watch his blood pressure and heartrate at home and monitor his energy levels.  Waiting and watching.  Unfortunately, we know all too well that the signs of rejection can show up long before the tests can detect them.  It doesn't make the waiting an easier....at all.

Thanks again for the prayers and support.  I wish I had a better way to say how much you are appreciated.  We are so blessed by the good health Keegan has enjoyed for the last year and all the progress he has made.  I think that in a way, that makes it harder because you get used to everything being so stable.  Then the next time it hits, you not only feel robbed of your child's health but of that bit of normalcy that you'd become accustomed to.  I wish that I could say that one day we'll be able to sit back and say, "whew, that was tough, but it's over now."  No, we'll never be able to say that.  Keegan will never be able to say that.  He doesn't know any different now.  But one day, he will.  I fear most the day that he says he doesn't want to fight it anymore - when the worry I feel becomes his.  So, I'll wait and watch today and tomorrow, just like yesterday and the day before that, and I'll make sure that he gets every opportunity to smile and enjoy it.  And I'll pray that my fears never become reality, and that if they do, we will be ready, strengthened by our friends, family, and the grace and healing hand of the only One who can lighten our burden.

1 comment:

The Millers said...

You all and Keegan are always on our minds. We are thankful for the test results and will continue to pray that he feels better. Hope to play soon!