Counting Our Blessings

Counting Our Blessings

Wednesday, June 19, 2013

9 Months

It has been nine long months since we were listed for a new heart.  For the past nine months we have gone to bed wondering if "tonight" would be the night.  We have woken up wondering will "today" be the day.  Not one day has gone by that we not think about it.  When we were first listed the Doctor told us it would probably take 6-9 months for the call.  He also said to expect anytime because he had patients where they did not even make it home from a clinic visit before they got the call.  To be honest we did not expect to be  waiting this long.  We are hopeful that God has the perfect heart for Noah.  We are also thankful for a good report after Noah's cath procedure.

Monday morning Noah went in for a heart cath procedure.  This is the test he had a year ago that told the doctors he had RCM.  The heart cath measures the pressures in your heart.  It had been a year and the doctors wanted to see how much the disease had progressed.  We were told the normal range was 8-12.  Last year Noah was at a 15.  This is high but not dangerously high.  This year Noah's pressures were at 16.  Still high but not dangerous.  With RCM these numbers can drastically change at any time. Every person responds differently and it is very hard for them to know when and how fast the numbers will jump up.  His lung pressures were in normal range.  This is a huge answer to prayer.  Noah is on medication to help his lung pressures stay in normal range.  People with RCM can develope high pressures in the lungs causing them to need a double heart and lung transplant.  So thankful for this good news.  Noah did great before and after the procedure.  He is such a brave little guy and he knows what needs to be done and just goes with it.  A nurse commented on what a well behaved sweet boy he is.  Words that do good for this mommas soul.  Of coarse this was of no surprise to me :)  I think he's pretty special.  Our sweet transplant coordinator Allison came to visit us in recovery.  She was so excited to tell us that they got a call 12 days ago that Noah was #2 for a heart.  They only call you when you are #1.  They all got excited seeing his name.  The #1 received the heart which means Noah is now #1.  We try not to get too excited over this.  This could all change if people move up on the list or if new people are added and they are at a higher category than Noah.  It all has to do with blood type, size, status and antibodies.

It has been a hard road of waiting and worry.  We are living our lives in limbo waiting for the next phase.  We rejoice with these small victories and are hopeful when we get good news.  We know we have a long journey ahead of us. We know that this new heart will not cure anything.  We know that it will come with other hard things.  We also know that this is God's plan for us.  We know that he works All things together for good. We know that he brings about these hard things so that the works of God can be displayed and we know that we can put our hope in him the creator and sustainer of life. Please pray for us as we strive to have joy in all circumstances.

1 comment:

  1. I just happened to stop by today and saw this - I had no idea your family was facing this. Wow. Keep blogging and sharing so the community can rally behind you all in prayer.