Wednesday, November 19, 2014

Epilepsy Awareness Month Day 19: The Careful Dance of Sickness

Despite my best efforts to keep Robert from getting my cold (which I got from Richard, by the way), Robert got sick.  He was congested for a few days then it hit in full force and last night Robert was wheezing and shivering which usually means a temperature is about to break out and pneumonia and sepsis are not far behind.

Credit: World Sepsis  Day Organization
There is always a concern of pneumonia and sepsis with Robert since he has weak lung muscles (part of his overall weak muscles and, yes, this is all due to a lifetime of uncontrolled seizures).  Robert is unable to get a good cough to get the congestion out of his lungs.  It just sits there brewing bacteria.  Then it turns into pneumonia, (usually with sepsis) and Robert is in the hospital in no time. The hospital stay leads to a decline and it takes forever to get Robert back to baseline. 

We have to stop this downhill ride as soon as we can.

When Robert is sick, I take his vitals at least twice a day.  Signs of sepsis include fever, high pulse rate and low blood pressure so I am on the lookout for these symptoms.  We keep a log of vitals so I know what his usual stats look like.

Robert’s pulmonary doctor agrees (his GP is a little less aggressive in his treatment so happily punts to the pulmonary doctor). The plan we developed with the pulmonary doctor is to put Robert on antibiotics early so that his colds do not develop into pneumonia.

Of course, colds never happen during regular doctor’s office hours.

While getting Robert ready for an early bedtime and dinner in bed, I called the doctor’s office and left a message for the GP on call (sometimes I call the pulmonary doctor’s service first but occasionally I start with the GP).  Robert’s doctors are very good about returning calls quickly and this wasn’t any different.

Since the doctor calling me back most likely doesn’t know me or Robert, I try to establish very early in the call that I know what I am talking about.  I am so adamant about not taking Robert to the hospital unless absolutely necessary, I don’t want to be dismissed.

I give a brief history of Robert’s pneumonia and sepsis, my reluctance to go to the hospital due to that causing a decline (I have yet run across a doctor who disagrees with this), rattle off his vitals and any other symptoms (labored breathing and shivering for instance).  Then I ask for antibiotics. 

There is usually hesitation which I completely understand.  However, Robert is not a healthy, young man who might become resistant to antibiotics when he is ninety. He is already resistant to a few antibiotics. It is more of a risk not to put him on antibiotics. 

Still the GP hesitates. They have to look at the chart, they have a policy against prescribing antibiotics until there’s a fever, they want me to wait until morning.

Deep breath.

I explain Robert has a pulmonary doctor and would they mind if I called that exchange as they have prescribed antibiotics in the past.  I’m not really asking permission but I do want to give them a courtesy “heads up” that I am going up the chain. 

They are usually more than happy to have me do this.

So I start over with the pulmonary doctor after hours number.  Run through my pitch for antibiotics and get them. 

Last night we were up against a deadline: the pharmacy was going to close soon. Yikes!  I need these antibiotics!

I was thrilled when the on call pulmonary doctor was Robert’s own doctor!  Woohoo!  I didn’t have to make my plea – I just had to give him the phone number of the pharmacy and tell him the last antibiotics that worked for Robert.

Hospitalization averted!  (At least everything has been done to avoid a hospitalization.)

We just wait for the antibiotics to work and for Robert to feel better.  I talked to Robert tonight to see how he was feeling and he said he is feeling a lot better now.  He then tells us about other people helping him and has a special message for Bowen – apparently someone who helped him out today at Day Program. 

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