A Step Forward & a Step Back

*** DAY +18 POST TRANSPLANT ***

     Our little Hazelnut is back!  She got several nights of great sleep, she's smiling, playing, being silly and bringing joy to everyone around her.  God has restored her spirit and I am so thankful!  Because her counts have been so low, Aaron and I made the choice that I would not take my chances going home and being exposed to something, only to bring it back to her.  So I have remained at the hospital since October 2nd, and he has only been able to visit a few times.  But since her counts have remained good, we felt it safe enough for Aaron to come stay the weekend with Hazel and for me to go home with the other children!  It was wonderful to spend that time together!  Hazel was feeling good and was so cheerful.  It was comforting to Aaron to have those moments with her.  As for me; I was able to carve pumpkins and decorate the house for fall, we rode bikes, watched movies and played games.  

     Despite all the progress she is making with her energy level, we have had several setbacks that will assure we will NOT be coming home this week.  She is still not eating or drinking, her nose continues to bleed and she is relying on several platelet transfusions, she she has spiked another fever and has had blood and clots in her urine (which has been painful for her and disrupting her sleep).  We have been doing many tests and this is what we know so far:

• The bloody urine came back positive for something called BK virus. They had to increase her fluids to flush it out and she had a few days where it seemed to clear up and she had no problems.  But this evening it came back with a vengeance.  It has caused a lot of pain so they had to re-increase the morphine.  They are even discussing putting her back on a continuous drip, which will only keep us here even longer.
• Most likely because of her BK virus, her counts have dropped a bit today.  Please pray that this does not become a trend!
• Her fever has led us to draw blood cultures from her central line to test for infections, but so far they have all come negative. 
• There continues to be no common symptoms that would indicate VOD
• Today, because of the fever, she had a CT scan to see if there is something fungal growing somewhere in her body.  This also was negative (praise GOD!)

     Although I am very happy that the test all continue to come back negative, I am also feeling very anxious.  The doctors seem at a loss for what would be causing this fever at Day +18 and keep running tests with no conclusive results.  So please pray for discernment for the doctors and that God would guide them to figure out what is wrong with my daughter.  And please pray that it is just a side effect from the transplant and nothing else!

     Though these days are difficult, my mighty and powerful God has remained ever faithful in carrying me through them.  He has comforted me in my sorrow, has lifted me up in joy and has displayed Himself to me in ways that I have never experienced.  And it is the prayer of my heart that everyone may see how He has worked in our family's life.  These last few weeks have been extremely arduous and sometimes very overwhelming, but I have taken comfort in His promises and, tonight, Paul's prayer to the church at Ephesus has really spoken to me and I hope it does to you:

Ephesians 3:16-19  I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge-that you may be filled to the measure of all the fullness of God.