Thursday, August 19, 2010

Prayers needed today!

Lenwood is having his upper GI this morning(10:30) which is the reflux test.  He has been consistently having bradys (heart rate drops) during and after feedings which is consistent with reflux,  In the last 12 hours they've gotten much worse.  When I was there for a little over an hour last night he had 4 bradys one of which I had to pat him to get it back up.  I spoke to the nurse this morning and he continued to do that through the night during and after his feedings.  Other times he slept and was fine.  She did say that he was starting to scare her (not sure what she means by that), but she went and told the practitioner about it.  They are going to see what the results of the upper GI are and go from there.  Please pray for him today.  Pray for the drs, specialists,  and nurses to find the answers needed to help him thrive and be stronger.
Yesterday we received news that Lenwood's second state screening came back with a marker for Cystic Fibrosis.  This does not mean that he has it, but it means he might which would be very bad...life altering bad.  However, his first state screen came back negative for CF.  So this test that indicates the CF marker could be a false positive, could be influenced by blood he received during one of his transfusions, or he could just be a carrier.  CF is one of those things that you have to receive a gene from mother and father to have it.  If he just has one gene he's a carrier, but has no symptoms.  This will affect him when he is an adult if he marries someone who's also a carrier.  This also means Conrad or Teague might have it or be carriers.  When they were born, CF was not including in the state screening yet.  They sent a DNA test yesterday that gives more information, but isn't definitive.  It takes two weeks to get back.  The definitive test can't be done until Lenwood is 3 months old.  I don't understand why we can't go ahead and test to see if Guy and I are carriers in the meantime, but for some reason that isn't the appropriate course of action.  Please pray for us as we wait in limbo for these results that will affect our entire family.  We feel very hopeful that the result was a mistake(and so do the doctors) or at the most he's a carrier, but we are still terrified at what might be.
Thank you so much for continuing to send prayers for us up to God.  I know he's listening and holding Lenwood close during his fight to get stronger and come home.

2 comments:

  1. Lots of different pieces of information that add up to lots of worry. I am definitely praying for you all. For what its worth we do metabolic screening in Maryland and CF has been on our panel for about 8-12 months longer than it has been on Alabama's panel and we have seen some false positives in our premies that has panned out to be nothing but lots of worries for mommy, daddy, and the medical staff. Praying for some resolution, answers, and knowledge for medical staff.

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  2. Sending up prayers for good results from all the tests. Sorry that you all are having to wait so long for the results--that is so hard on everybody.

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