Medical Frustration

Friday September 14, 2012
Harrisburg Hospital, Harrisburg Pennsylvania

 

 

These have been among the most frustrating days of this entire 9 month nightmare.

After David was admitted on Tuesday night and his blood counts taken, it was clear that he was much sicker than he wanted to believe.  Since then his counts have steadily fallen as his temperature has jumped back and forth between relatively normal and too high.

 

Carrie and I were with him on Wednesday and we thought things would be fine since we assumed these folks had the situation in hand and  knew what they were doing.  She was a great help to me in many ways including the navigation around an area with which I am very unfamiliar.  I was sorry when she had to return to Baltimore on Thursday evening.

Thursday morning when his numbers had done nothing but drop, it was clear that no one but us was taking this seriously enough.  And by this morning, Friday, when his numbers dropped even further, I was, as my midwestern grandfather used to say, madder than a wet hen.

 

No wonder our health care system is broken.

We have pretty much had to take over constant monitoring of what these medical folks are doing and not doing.  The doctors don’t talk to one another apparently.  Today the Infectious Disease doctor stopped one of the antibiotics and the hematologist on call reinstated it this evening.

As of 4:00 today, only one doctor had been in to see David.  If you are an inpatient, all of your doctors are supposed to do rounds on you EVERY SINGLE DAY to check the status of your condition and their orders.  That means they actually come in to your room and talk to you.

Today his hematologist did not come in to see him once.  BUT that doctor wrote notes for his chart.  About his visit I assume.  Except there was no visit.  I have asked to see the notes.  I am becoming the wicked witch of the west.  So much for mild mannered southern women

Thursday as it began to be clear that no one here knew what they were doing I started writing to David’s doctors at Moffitt who have been extraordinary.  I am in constant contact telling them all his blood numbers and getting their recommendations which we then have to make sure this hospital carries out.  

David has to check every dose of every medication and its timing.  He has to insist that they tell him his blood pressure and temperature when they do his vital signs and not in Celsius but in Fahrenheit which of course they don’t know.  They just write the numbers down.

All the blood cultures have come back negative so there is no way to know what is causing this infection unless it is tick born.  But these tick born diseases can take 3 weeks or more to manifest in the blood.  Thus they are treating this as though that is the problem.  Thus he is on two different antibiotics.  One by IV three times a day and one by mouth twice a day.   In his immunocompromised condition, they are also giving him additional drugs to raise his white and red blood cell counts and his platelets which have dropped by nearly 150 in three days.  This morning his platelet count was .69.  129-366 is normal.  His count was 163 when he was admitted.

So we are stuck at what I consider to be a nearly incompetent facility where they are being paid by our insurance to provide care which is actually being determined by his fine doctors from Moffitt who are being reimbursed nothing.  No wonder our health care system is in trouble.  Doctors can get paid for writing notes on patients they do not see.  They can get paid while their patients get worse and they countermand each others orders.

 

We take the bright spots where we can get them.

~Several of his nurses have been wonderful and quite knowledgeable.  It appears to be the doctors who are unimpressive here.

 

~David can manage to smile and make himself look like he feels a great deal better than he does.  Is this a good thing??

~He did get up and put some clothes on today for the first time in 3 days.  I thought that might make him feel better but mostly it just exhausted him.

~I brought him a croissant from Hershey’s and some decent coffee since according to David the food here is the worst he has ever tasted in his life.  Moffitt’s food wasn’t great but seems like gourmet compared to this.   The coffee and pastry perked him up a bit.   But having to be constantly making sure that what is supposed to happen is happening and nothing else is happening is a real strain for him.

 

~He has a lovely view of the Susquehanna River which unfortunately you can’t see from the bed but is what finally lured him to make the effort to get out to sit in the chair from which you can see it.  Too bad about the harsh lights and the reflection spoiling my only picture of the view.  But you get the idea.

 

~As of tonight, his fever has been below the danger zone for 24 hours which is a very good sign.  If his numbers would just go up, he could go home with only the oral antibiotic prescribed for Lyme Disease.  At the very most optimistic this cannot happen before Monday.

 

Here comes the advice from someone who has too much experience in this area:  

1) Be VERY aware of deer ticks.  They are teeny tiny and everywhere at least on the east coast.  Check your hair, check everywhere.

 

2) If you ever have to go into the hospital for anything even remotely serious, DO YOUR RESEARCH.  Make sure you go to the hospital which is either #1 or #2 in the country for that condition.  No matter how far away it is from your home or current location.  There is no substitute for experience.