Not Sure

We have another set of positive blood cultures.  Its the 5th set and we just aren't sure what to do about the very resistant and very stubborn bacteria residing inside of her central line.  We have faced some difficult infections in the past, but never have we met one such as this.  Nothing we have tried has been successful inside of her line.  In the lab the bacteria responds to the antibiotic but inside of Ashley it does not.

We are stunned.  Numb.  Afraid.

In addition to the positive blood cultures her CBC shows us that she is either bleeding from somewhere internally or her body is devouring her blood supply.  I have no idea what is going on.  Her hemoglobin is very low again, losing about 2 points between blood draws and her body is not showing us any sign of working to replenish it on its own. Her hematocrit and her platelets are dropping as well.   She needs more blood this week.

All of the "go to" reasons" for the low blood supply or lack of ability to make its own have pretty much been ruled out.  We initially thought that is was low iron because of her extended reliance on TPN, but once replaced it should have maintained for a little while.  Instead it seems to be lost inside of her body with no culprit to blame.

On two occasions in the last 2 weeks I have discovered her to have a mouth full of blood and large blood clots(the size of a quarter!) sitting on her tongue.  After the initial panic and shock we searched for a reason and found none.  The best we could come up with is that  perhaps its coming up from her esophagus or stomach as a side effect of the years of vomiting.

Her liver seems to be stable.  At least according to all the blood work we have seen and believe me when I tell you we are doing lots of labs as of late.  So we have ruled out her liver as the cause of the blood issues.

So we are left unsure about what course to take from here.  There are no easy answers.  No obvious answers.  No answers at all today.  We will begin digging for more in the morning and hope to come up with a plan to effectively treat this line infection and to get her another blood transfusion as soon as possible.

The good news is the sound of her giggling that floats across the room at this moment.  She's not concerned one little bit about all of this.