Thursday, May 26, 2011

Difficult

The best word I can find to describe things right now.  Difficult.

Difficult to process.  Difficult to understand.  Difficult to explain.  Difficult to accept.

Without getting into too much detail right this moment, a lot has changed in our picture in the last few days.  Keegan's bloodwork for graft-vs-host disease came back negative.  That pretty much puts us back at square one with Keegan's GI problems.  Which couldn't come at a worse time because they are getting so bad.  Today was particularly difficult for Keegan from a GI standpoint.  I had started to say that the only thing that could get worse at this point would be the volume of output.  That was one of the main reasons we kept his g-tube feeds at such a low rate.  Well, the volume has been crazy lately for no apparent reason.  When will I learn to keep my mouth shut?  Unfortunately, we are now just guessing what to do next, but all signs seem to indicate a steroid pulse.  That was already our plan, so we will stay the course with that for now.

Keegan's bone marrow is still struggling across the board.  White count, hemoglobin, and platelets are all low.  His hematologist is working closely with our transplant team as we start the steroid pulse next week.  We are all rightfully concerned how his weak marrow will tolerate this pulse, but we are trying to be as proactive as possible in supporting him.  The doctors have raised his threshold for support and transfusion.  They have vowed to jump in as soon as we meet those levels.  We have now quadrupled his blood pressure medication, but it is still high.  I don't know what comes next on that end.  He is still bleeding into his central lines, too.

The bigger development this week (and by far, the hardest to come to terms with for us) was learning that Keegan has developed two types of donor-specific antibodies in his blood.  Antibodies are proteins your body forms in response to antigens, i.e. things it detects as being harmful or foreign.  You develop antibodies in response to vaccines, each time you get a cold or virus, etc.  Well, Keegan's heart is not his own.  His body has figured that out and formed antibodies against it.  These antibodies are in the beginning stages, so they are weak.  We know they are in his blood, and next week during his cath, we are hoping to find out that they have not attached themselves to the vessels of his heart yet.  Metaphorically speaking, his body has created a weak army to fight his heart, but we are unsure if this new army has been told exactly where the battlefield is.

It is probably easy to figure out from that description that these antibodies increase Keegan's risk of rejection and transplant coronary artery disease (TCAD) exponentially.  We were already planning to take him to the cath lab next week to check his ventricular pressure, but now, this cath has taken on the utmost importance.  We are praying and hoping and begging that these weak antibodies have not started to do their "job" yet.  Detecting these antibodies is of utmost importance in being vigilant to screen Keegan for rejection and TCAD, but we wouldn't and couldn't necessarily do much more to prevent them from getting stronger.  The first steps when TCAD is detected is to put you on rapamune (the immunosuppressant Keegan is already on) and increase steroids (which we were already planning to do next week anyway).  Right now, Keegan is scheduled to be admitted Wednesday for the cath, and depending on what we find and how he is doing, the steroid pulse could begin as early as Thursday.  He will stay inpatient for the beginning of it.  It shouldn't be too long of a stay, but Keegan's never been one to follow those estimates.

For now, we, as a family, are defeated.  If we weren't before, we certainly are now.  The wind has almost all but left our sails at this point.  I wish I could say we are ready for this battle.  Every bone in my body is telling me that this is just the beginning of not just a battle, but a war.  We will get up tomorrow and fight the same way we always have.  We will not give up.  I just wish that we felt ready to face the dawn.  I pray that Keegan is.  I pray that we all are.  This is the most difficult situation we have been in since his birth and transplant.  There are so, so many issues Keegan is dealing with.  We are honored to have a team of doctors here to help us put on our best armor.  And we are humbled that so many have joined us and stand behind us as we ready to face such a difficult tide once again.

We can only ask for your prayers and support at this time.  Thank you doesn't even begin to cover it.

I was pushed back and about to fall,
but the Lord helped me.
The Lord is my strength and my defense;
He has become my salvation.
Psalm 118:13-14

9 comments:

Tricia Buckley said...

My heart aches for you and your family. Keegan is so strong I know he will fight through this. Stay strong! You are all in our prayers.

Laura Madison said...

Maddie, your strength and courage continue to amaze and inspire me. I'll be praying for your family and Keegan's doctors and nurses.

Kira Willingham said...

Prayers and strength and courage are going up for you all from San Antonio. I follow your blog via Kelley Loredo's blog. I think you are all the strongest people I have ever heard of. Love...

jenni said...

Keegan's heart isn't his own, you're right. It belongs to God and we're all praying that He continues to hold it in the palm of His hand. Continued love and prayers during this most difficult time.

scrippe1 said...

I am continually amazed at how strong the two of you are. You are truly very impressive. Keegan does as well as he does because of your strength. I know it doesn't seem that way, but it's true. You are diligent about understanding what he is going through and proactive about his care. Not very many people are like that - regardless of how much they would like to be. Maddie, you are an exceptional woman, I'm very proud of you. God gave you your intelligence and perseverance for a reason, and Keegan is it. Keep up your spirits, we are all here for you and praying for all of you.

Love you all,

Aunt Stephanie

Dustin & Kate said...

Joining you in prayer! May you find strength in the knowledge that others are praying for your precious family. Keegan will be in my thoughts and I will be checking back for updates of specific things to pray for.
Love, Kate Wallace

Julie said...

Joining you in prayer. May God hold you and Keegan in the palm of His hand. May you feel His strength and His hands holding you.

Julie

David and April Vinson said...

Maddie and Gray,

I am a friend of a friend and have been reading your blog. As a mommy of two little boys of my own, my heart aches at reading of all that your little son and your family are going through. I cannot begin to imagine how terrible it must be to watch your precious son go through so much. I am praying for each one of you! You are an inspiration in the middle of such difficulty! (Even when you're weak and not up for a battle.)

Anonymous said...

I know you feel drained of strength right now. You are empty. But that makes you an absolutely perfect vessel to be filled to the brim with God's grace. You don't feel ready for the fight, but Jesus Christ, our Lord and Savior, already won the war. Father God knows what its like to watch a son suffer, and he is filling you and Gray with everything you need to keep holding up your family. You will get through this, and your struggle will glorify God. You are in my prayers.