Able to talk with her Primary Team

I was able to talk with her primary team to clarify all the "freaking out" I felt like they were doing last night.

They are concerned that she still has a fever and her heartrate and blood pressure is up.  They are wanting to wait and see what happens in another day or two with the correct antibiotic.  But they are concerned, that there may be another infection somewhere.

Urine looked good.

They do want to do an ultrasound of her back to see if they can see any more fluid collections (infection).  That seems reasonable to me.  I asked if we could look at the sore on her head (on the shunt tubing) (it looks like a pimple) that has been there for 2 weeks.  Maybe it is more than we think it is.  They said they don't think it will show anything, but they are going to order it.

They are going to give her some IV fluids to see if that will help her heart rate and blood pressure.  Although her electrolytes are normal, they think she may need a little extra while she fights off this infection.

Her primary team did not order the surgery spot for today, that was orthopedic surgery and they didn't talk with me or with her primary team.

Infectious Disease told me yesterday that her wound had grown serratia, but they double checked and today they told me that was incorrect.  It only grew the resistant ecoli and klebsiella.

Infectious disease is more worried with her vitals than her CRP...so they are worried too that there may be another infection going on somewhere.

I also suggested that maybe she has c-diff.  Flagyl is the medicine they use to treat c-diff and she had been on that (but not for c-diff).  They took her off flagyl a few days ago, so maybe we were treating c-diff without knowing it.  They are sending a sample.

I also suggested that since her heartrate and temp went up in the morning, what about checking her cortisol.  The Dr. said I have now earned my honorary medical degree.  They said it was a good idea, but they still think it's an infection.

I feel like we are more on the same page this morning.  We are all worried, but not freaking out (yet).

Today Ellie is sleepy.  But when she has been awake she has not acted so drugged up (glazed over).  So I think switching the baclofen back to every 6 hours instead of every 4 hours was a good move.

I still don't feel like I have had my question answered from orthopedic surgery...I have asked them specifically 3 times, but I don't think they understand what I am asking.  On her previous back ultrasound it showed a fluid collection around the baclofen pump tubing and another possible fluid collection up higher along her spine/rods.  I know they cleaned out around the baclofen pump tubing and they looked at L2-L5 on her spine (the baclofen pump tubing had infection, but the spine did not).  But did they look at the fluid up higher.  What vertebrae did the fluid collection show up on the ultrasound...was it within L2-L5?  If not, I think there may be another pocket of fluid up higher.  I have a feeling it was up higher.  One reason I suspect this is that her previous rod/spine infection was in 2 locations on her back...one down low and one up a little higher.  Infectious Disease has agreed to track down that information for me.

I asked rehab if too much or too little of the baclofen or valium could cause a fever or increased heartrate...they said possible withdrawal, but it is highly unlikely.

I asked if it could be pain since they stopped the oxycodone a while ago.  They said they tried giving her some oxycodone last night and her heartrate did not decrease at all.