Sunday, April 13th - Exasperation

It is midnight - so i will keep this posting short, it has been another long day.

This morning we were encouraged by how lucid Lisa was.  She was able to have a few short conversations with us and ask questions about what they are treating her for and what we think is going on, etc.  After mid-morning though, she became very lethargic and had a difficult time keeping her eyes open or responding.  

They are almost solely focusing on her blood pressure.  It has been stable with the IV medicines, but they have to get her to be able to take it orally.  When they tried to take her off one of them - it shot back up, so it was a back and forth process all day.

It has been really frustrating to sit there all day and not be updated by her 'team' of doctors.  She has 7 different specialists assigned to her case and we have had less than five minutes with 3 of them and one of them has been fairly accessible - but 3 we have never even seen.  There is not one person overseeing her treatment - but all 7 acting independently, hopefully looking at her chart to see what any others have ordered.  With all of those - no one has been called in to address her thyroid problem.  It was a very frustrating day.  Navigating our health care system is a joke - and for people that don't have pushy families, I feel sorry for them.

We learned late in the day from one of her nurses that they were not aware of her stroke, they thought the MRI was ordered because she had a seizure.  She argued with us for a minute when we mentioned the MRI she had at Baptist East, saying it was a Cat Scan and she hadn't already had one.  How in the world can they treat or interpret what is going on if they do not have any idea what her history is ...not years back - but just the last 2 weeks!

Another frustration today was that the heart surgeon told us there was no dissection on the test they ran, the cardiologist said he did see the aneurism dissection, then the doctor that works with the surgeon said that it was not a dissection, or even technically an aneurism - but they would treat it with medicine as if it were to prevent it from reaching that stage.  Now - if that is not confusing, I don't know what is!  And how do we answer Lisa when she asks what they found?  UGH.

The night nurse (Brook) is now our very favorite.  She looks like she is a high school student, but very compassionate and competent.   When she explained how Lisa had been during her shift last night, Jennifer suggested that maybe because of the stroke she was having trouble connecting things and communicating what she wanted.  Brook was not aware of the same things i listed before.  So as we told her some of Lisa's history - she actually wrote things down, went and looked things up and updated her chart.  She did find that her history did refer to the the original MRI that showed the possible stroke area.  I guess everyone was so focused on the heart side of things when she came in that it seemed secondary.  She gave us suggestions on how we could get things moving a bit better and connected some of Lisa's symptoms to her thyroid problem and was going to work with her "posse" to figure out how to get the thyroid issue addressed quickly.  She said she felt like Angela Lansbury trying to solve this mystery and that won Jennifer over immediately, since she is addicted to "Murder, She Wrote."

So, the plan for Monday is:

• Try to keep her blood pressure down with little or no IV meds
• Get her MRI done
• Have a consult on her thyroid
• Dialysis 
• Broach the subject of moving her back to Baptist East
• Hopefully some of her blood work will be back and they can pinpoint what is causing her fever

Thanks for your prayers!