Not So Good…

The appointment was not so good.  Thing 1 seems to be doing much better.  Since starting the new med a few months ago, we have not been seeing the shortness of breath, he seems to have more energy, and actually acts like a 4 year old.  We really expected the doctor to tell us she was pleased and would see us in a few months

Instead she said she is calling the transplant team.  It is not official that he is going on the list.  She wants to turn all of his paperwork, tests, and labs in to the team and let them decide.  So, immediately one of 2 things could happen.  They could review his stuff and decide he is not ready for this and tell us to check back in a few months.  Or they could ask us to come in for testing.  If the second scenario occurs, it is still not a sure thing.  They could run the tests and decide not to place him on the list yet.  Or they could run them, type him, and place him on the list.  At this point, he would be lower on the list.  As time passes and he moves further downhill, he would move up the list.

So, for now I do not know a whole lot.  We chose the center we want to work with.  (The hospital is about 3 hours from our current location.)  I checked with our current insurance and Tricare.  The hospital is covered by both.  Now we wait for a call from either the cardiologist or the hospital.  Then we go from there.

(I am sure you are wondering how I am handling it.  Right now, my head is spinning.  I am focusing on the logistics.  How will I get both boys there and back for a few days worth of testing by myself if needed?  Will we need to move closer?  If Thing 1 is placed low on the list, could he sit on the list potentially for a couple years?  Must we live there the entire time?  I have to focus on this stuff.  I can fix this stuff.  I can figure out a way to get us there.  I can find a place for us to live.  I can find a new school, church, stores, etc.  I cannot fix the heart.  I cannot think about it.)

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One thought on “Not So Good…

  1. Oh I’m so so sorry. This has to be so scary for you and you’re right – a TON of logistics to think about. Hopefully you get some concrete answers soon so you can plan what you need. ((Hugs))

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