Friday, January 31, 2014

broken record

No extubation today.  No happy wonderful thoughts.  A lot of crying and feeling alone.  I feel like a broken record. Everyday is the same.  Wake up with hopes of good news and progress only to get to the hospital to see everything is the same or worse.  I am loosing hope.  I don't know if my daughter is ever going to get better.

Her X-rays looked worse today. She has fluid everywhere.  They cant get rid of the fluid without stopping her formula.  They cant stop the formula because she is already so malnourished from them withholding food the last several weeks that her body wont fight to breathe without food.  Her hemoglobin is low again so she needs a blood transfusion.  Her oxygen wont stay in the 90s.  She wont have any bowel movements because she is on so much sedation meeds her bowlels aren't working.  When we lower the sedation meds she is in pain and tries to pull the breathing tube out.  Her heart meeds are keeping her out of SVT but they are slowing her heart down so much that she is sitting at 70 beats per minute so she has to use a pace maker to keep her above 100.  If we lower the meds her heart will beat where it is supposed to but then she will continue to go into SVT.  Everything is so up and down and there is no happy medium.  It is so overwhelming to think about every thing that she still needs to overcome before we go home.

So im back in my room to fall asleep and hope for a better day tomorrow.