Tired (Day 7 post 9)

( Mon morning)

 I’m tired...not Ellie.  Tired of fighting, tired of not being heard.

I have not posted the last few days and this will be a short post because, once again, I am tired.

Ellie’s seizures are under control thankfully.  Except the last 2 nights she has bitten her bottom lip twice each night, this may or may not be a seizure.

Her temperature is still unstable.  

In the mornings her heart rate is still high.

She is still sick.  This may be for 1 of 2 reasons:

#1) she is on the wrong antibiotics so the infection is not being helped as much as it needs to be

#2) the current antibiotics haven’t had enough time to work

They originally only wanted antibiotics for 1 more day.  I fought and they agreed to 3 more days.  

I think she may need a different antibiotic, but they are not buying it.  They said to follow up with her primary care dr.  

I’m tired, I’m done fighting.  We are coming home today.

The ENT resident or fellow or whoever said that her regular ENT would be by sometime today, so we will wait for that and then we will leave.  Her ear was growing normal respiratory flora as well as yeast.  And the hole from her ear tube may have closed now.  

I am hopeful things will clear up at home, but I am not holding my breath that we won’t be back soon.