1 Week In

Today was the 1 week mark.  A mark they we did not expect a week ago.  We had hopes of a release this week.  As previously mentioned, if we could get her IRI number down (blood thinners) and off the high flow oxygen, we had a shot.

We learned that the drug they were giving her, Coumadin, has a reaction to Vit K.  We discussed this as they put her on it and all understood that Vit K would negate the Coumadin.  Everyone forgot that her CF vitamins contained Vit K and thus we lost of a week of progress.  HUGE disappointment for Laura.

As we discussed going home the doctor's were ok with that but made it clear that if ANYTHING at all went wrong we would be back in the hospital until the transplant happens.  That could be days, weeks or months.  A respite at home would have been nice.  It is still a possibility but the extra week in the hospital does make it harder.

On a positive note the antibiotics are doing their work on the pneumonia.  The result does not really change how Laura feels but it does buy more time to find lungs.

They did increase her resting oxygen to 10 liters.  This will bump her LAS (Lung Allocation Score) up from 57 but we have not heard what the new number is.

As always she is a stellar patient.  Walking daily, eating, though she has no appetite and smiling and laughing.  She has found the channel that shows every episode of Friends from back in the day.  Pretty funny to re-watch.

Always, thanks again for the calls, emails, txt, letters...etc.  It does help.  #teamlaura is amazing.  The funds raised from the shirts will make a huge difference in the lives of others that are going through this without the support network we are so lucky to have.

Hope to have news of a transplant soon.

Love to all

The Z's