The first night

   The first night was terrible.  Sadie spiked a fever of 104.0 and we could not get it down.  Tylenol, Motrin, more Tylenol, and finally another dose of Motrin and the fever came down to 100.0.  The whole night she was seizing and was so lethargic.  She was not my baby at all.  What was wrong! We had no diagnosis.  Her blood work looked great, her chest x ray showed some inflammation but nothing major, and her lumbar puncture came back normal (they were checking her for meningitis). Ok so now what. Her oxygen is dropping, her cough was horrible and she was requiring a fairly decent amount of oxygen.  After her fever finally dropped and she woke up a little she became very fussy.  Now whats wrong?  She had not eaten in a while, maybe she is hungry, lets try some clear liquids.  I am about to hook her up to her g-tube extension and I open the flap that keeps it closed and what happens..... BLOOD comes pouring out of it.  OMG!  I don't freak and panic very easily.  I freaked!  Why does my baby have blood coming from the inside of her belly.  I call the nurse, the nurse calls the Dr, the Dr comes quickly.  We all stare at it and come up with a million different reasons of what could have caused the blood.  The good thing was that it was not fresh, bright red blood.  It was old, dark brown blood.  Which proved that she was not bleeding currently, but what was bleeding and why?  We decide to not give her anything else in her g-tube for the night and just watch and see what happens.  Her vital signs were all stable, she had no pain in her belly and it was nice and soft.  I felt comfortable with the decision that was made.
  After the fever episode and the blood episode the neurologist came in her room (which by the way is not the same Dr that I fired, but he is from the same office) to discuss the seizure episodes.  He stated that we were going to give Sadie some more seizure meds and do an EEG in the morning.  I agreed with the plan.
  It was now 4:30a.  I was tired.  I think I slept for approx 5 hours in the last 48 hrs. But I was afraid to fall asleep.  I don't know why.  Sadie was stable. She had monitors on so the nurses were watching her at all times and someone was coming in her room often (almost to the point of annoying, but I was grateful that it was annoying at the same time).  I wanted to sleep, I also wanted to cry.  For some reason though the tears would not fall.  I just sat and stared at her, watching her every breath, her every movement.  Making sure I didn't miss a thing.

to be continued...