How do you spell INSANITY

I will tell you how to spell insanity; R -E -D  C- R -O -S -S.  I hate to give them a bad rap but they seriously messed up today!  This morning, Shelbie was suppose to get her platelets at 8:00am.  We arrived early, ready to deal.  The platelets had not arrived as anticipated because of the storm that has been in the area for a few days.  Salt Lake had grounded flights last night.  No big deal, she said they tracked the package with Red Cross and the platelets had been irradiated and they had been put on the first flight out this morning so it would just be a couple of hours.  We left, went home and waited for them to call us back up.  The nurse called around 11:00 to say that they didn't make the flight as planned but they would be put on a later flight but would arrive at the hospital at 2:30.  We went back up at 2:00 to get the IV started, bloodwork done etc.  2:30 came and we were anxious to get things started.  Her platelets had now dropped to 1000.  Very dangerous at this point for hemorhaging spontaneously.  We tried to be patient.  Just after 3:00 the nurses came in with some bad news.  The blood had arrived but it wasn't for Shelbie.  They had mixed up the blood!  So, back on the phone with Red Cross, they promise it will be on the next flight.  At this point, I thinking two things: I could have driven down there myself, drove it home and had her transfused long before now and how many next flights can there possibly be?  Finally, at 5:30 the platelets had arrived safely and were ready for her. 

It's really hard to describe everything I was feeling the moment the nurse hung the IV bag of platelets.  You would have thought we just received a heart or a liver! Something more precious than life itself.  I felt so much gratitude for the one person who has dedicated themselves to giving blood every month.  Such an easy thing to them I'm sure but to us, it literally saved our daughter's life.  Shelbie can't have the typical donated blood because she is a high risk patient and potential transplant recipient.  We can't afford for her to get Myelofibrosis, it would complicate and compromise a successful transplant.  I wanted to cry but didn't.  I was sort of in shock as I watched her parched body gulp up those precious cells.  It took less than 5 min for her to drain those honey colored platelets.  Amazing!  In a half hour, her platelet count had gone from 1 to 55.  A tremendous blessing!  Far from normal, but we'll take it!

So, here is the run down of what the next few hours hold for us.  At 8:00am this morning, (Thursday) we will go back to the hospital for another CBC.  If she has crashed again, then they will diagnose her with autoimmune thrombocytopenia, ITP.  This disease means that her immune system is seeing her platelets as a bad thing and destroying them faster than she can make them.  It is difficult to treat and there is no long term cure as far as I know.  If the platelet count is still at 55 or higher, then they will make the diagnosis of aplastic anemia which is essentially bone marrow failure.  She has been in bone marrow failure for some time but there are degrees of failure.  Remember from the results two weeks ago, the doctor said she didn't know how much longer their bodies can continue to compensate for their lack of marrow.  Well, maybe her body has finally had it.  Tomorrow will tell.  There is a third possibility that she has both in which case I really don't know what happens. 

What becomes the treatment?  If she has ITP, then we start infusions of IVIG which sucks!  When she had this three years ago, she contracted aseptic meningitis which is a rare side effect.  She would have to have this weekly and usually involves a day or two in the hospital if there are no side effects.  If it is bone marrow failure then we will keep her going with transfusions until everything is in place for a bone marrow transplant.  That could be months down the road.  It's a lot of information. 

All in all, I am overwhelmed with the outpouring of love and prayers.  A great friend came by tonight to cheer Shelbie up and we enjoyed just laughing and letting go of the heavy day.  Another person called to say she would donate blood for Shelbie, they have the same rare blood type!  How awesome is that?  I am really touched.  It will be a great Thanksgiving no matter what happens!  We are so blessed and live a life of abundance!

Comments

  1. Poor girl! I wish there was something I could do! I'm praying for all of you!

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