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.
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| 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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