Sunday, January 23, 2011


I suppose I've put this post off long enough.  Keegan has a very big day tomorrow, and I guess, in some way, I felt that not posting about it meant not thinking about it, which would help me not worry so much about it.  Yet, time doesn't wait for you to stop worrying.  Tomorrow is upon us, and as pompous as it sounds, I'd like to think you've been waiting for this update.  Maybe a few people out there have been.  At any rate, I have certainly been putting it off, so here's the scoop.

Keegan will have another day admit at the main hospital tomorrow to have a "glo-fil" kidney test done.  To the best of my knowledge, this involves infusing a dye into his system and then performing a series of x-rays and blood draws over the course of about 6 hours to see the rate and efficacy of his kidney's filtration.  This test will actually give us a percentage of function for Keegan's kidney(s).  We are hoping for anything over 50%, and it is my understanding that 35-30% or below is considered end stage renal failure.

Keegan had his day admit for the IV infusion of the immunosuppression drug and his breathing treatment (a nebulized drug that prevents a certain type of pneumonia that only affects and can be fatal to the immunocompromised) this past Wednesday.  The drug for the breathing treatment is dosed based on weight, and Keegan's weight was up even more on Wednesday.  He is now retaining about 3.5 pounds of fluid. To put that in perspective, it is over 10% of his current weight and almost 12% of his "good" weight.  It would be the equivalent of me gaining about 11 pounds in 2 weeks.  Make a little more sense now?  It's a bit more alarming when you consider that he is eating almost nothng by mouth anymore, save a handful of Goldfish crackers and a bit of pureed vegetables.

That weight prompted some more labs, which once again told us absolutely nothing.  (AHHHHHHHH!!!!! Pardon me...screaming under my breath a bit for a moment....)  Ultimately, fluid retention is usually caused by heart failure, kidney failure, or liver problems.  At this point, we are 99.99% sure his heart is absolutely fine.  He is scheduled for the complete kidney testing tomorrow, and we have added every liver function lab known to man.  We will see his GI doctor on Tuesday, when we can address the liver issue and the fact that his GI problems have yet to improve.  Despite the fact that last week we started him back on the antibiotic that worked from Boston. 

Because of the fluid retention, his team had us give him additional lasix this weekend, and unfortunately, it seems he is not responding to the extra doses as he did in the past.  We actually went back to recording his "ins and outs" (what he takes in by tube or mouth and weighing his diapers) this weekend, and he is clearing less than half of his intake through urine or stool.  We can certainly assume what we think this means, but we will submit what we have recordered through the weekend to his team.  With that and the results of his testing tomorrow, we hope to have a better idea of where he stands by the end of next week.

I doubt I need to say it at this point, but we would be beyond grateful for your prayers for Keegan tomorrow, as we are every day.  To be quite honest, we are unsure what to ask you to pray for at this point.  Healing...good results...results that even make sense...who knows.  I've gotten to the point where I just pray.  For nothing in particular, just for my son and my family.  Romans 8:26-27 tells us:
 Meanwhile, the moment we get tired in the waiting, God's Spirit is right alongside helping us along. If we don't know how or what to pray, it doesn't matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. (The Message)

Perhaps you can tell through the tag in the header of this very blog, but I live each day confident that our God is working through Keegan toward a greater good, whether it will be realized in this life or not.  He tells us that in Romans 8:28...In all things, God works for the good of those who love Him.  Because of that very promise, we do not have to pray for anything in particular.  So, we may pray boldly.  Asking that His will be done, and not be ashamed to hope and pray that our wants are His will.  That He will grant a life and health to Keegan and so many others.  But if it is not, then we can be confident knowing that it is not because of anything we have done or out of ill will.  Because whatever may come, His salvation is imminent.  It began with the birth and death of His Son, and it continues through our lives, struggles, and sacrifices today.  The Lord has a plan for Keegan...for me and for you.  I pray that you know that today.  I try to remember and rest in that fact as much as possible.  And I give my worries over to Him and confess them to you, hoping and praying that in doing so, His will is done.  Knowing that Keegan will and can keep fighting because of our Lord's promise to make it make it matter.  Thank you for joining us tomorrow and every day.  There is nothing more we could ask of you.  Really...thank you.


Cody said...

Maddie, thank you ... in the past few weeks you have appeared to be holding back. We appreciate you sharing, it does sound scary & we will be praying. Please know that we are with you, Gray, Miss A & Keegan .. & will be anxious to hear the outcome. Bug has touched so many lives already, and I'm sure many more to come. Sending our love ... Cody & Gary

Julie said...

I found your blog about a month ago through another parent's blog about their daughter who had a heart transplant. I am keeping Keegan and all of you in my prayers, praying for healing and comfort for you all.