Beyond The Coat

August 21.  I have a lot of important events associated with August 21.  First, it’s my Dad’s birthday.  Second, I often started back to college on this date and it was something I looked forward to all summer while driving the tractor.   August 21, 2017 had even more events than normal.  My Dad still celebrated another year on this Earth in his characteristic non-celebratory way.   My big girl started preschool.

 

It was also the date that I ended up on the other side of the hospital room door.

My son was 5 weeks old and I was home on maternity leave.   Things had settled down a tiny bit from bringing him home and I was priding myself on getting a little work done that day.   Here I am snuggling him and breathing in that sweet newborn scent and working on a paper. 

I continued to work on that paper and he was being so good.   In retrospect, he was being too good.   He was making a lot of grunting noises but in all of his 5 weeks of life, he had declared himself a grunter so I didn’t think much of it.  I went to pick up my daughter from preschool around 4:30 pm and it seemed like every time I picked him up, he was in pain.   On the short drive back to our house, I decided that something must be wrong with him.  I brought the kids in the house and went to change his diaper.  Again, he cried when I took him in and out of his car seat.  I went to change his diaper, and took his temperature.   100.6 F.

My heart sank a little.  I had just told my friends the week before how happy I was that we had passed the 4 week mark.  Newborn babies are susceptible to meningitis, or inflammation or infection of the membranes that cover the brain and spinal cord.    The human body is built to protect the brain.   This is why we have thick skulls that are hard to break.   The body creates a blood/brain barrier so that it is harder for infections and drugs to get to the brain.  This is why chemotherapy given through an IV can’t get into the brain and we must give it directly into the spinal fluid as I discussed here.

Unfortunately it takes a little while for that barrier to be in its peak performance and hence babies are susceptible to meningitis.  The highest risk period is in the first four weeks after birth but it really extends up to 3 months after birth.    The recommendations is to test every baby with a fever under four weeks with a spinal tap to rule out or rule in an infection.   Hence, my happiness with my son surpassing that four week mark.

100.6.  I knew I had to take him in and I felt like something was off.  My husband came home as I was texting all of my pediatrician friends.   Again, I knew I had to take him in but sometimes a little back up is nice.  I packed a bag and loaded him up in the car and drove to Texas Children’s Hospital.

By the time I was pulling into the garage, I knew that he was getting worse.  I parked in my work garage and made the short walk to the ER.  I walked up to the check in desk and said I have a febrile 5 week old.   10 minutes later we were in the triage nurse area and his temperature was 101.4.   He was miserable and puny looking.

Side note:  Puny is a word we often use to describe patients we are worried will get very sick soon…not a medical term but we all know what it means.  My mom used to call it  ‘punky’ looking and I am sure there are other familial and regional differences in what people call it.   It’s that look in a kid that is just not right.  Wimpy, punky, puny….whatever you want to call it, that was how my kid looked.

We got moved to a room and an ER colleague of mine came in.   She immediately apologized and said, “Wendy, I think we have to tap him.”  It was August, and as you know, in July the new interns start.  I was a trainee.  I teach trainees.   Everyone has to learn.  I kindly asked who was going to do the tap. I wasn’t trying to pull favors, but an intern doing their first spinal tap with an attending oncology physician/mom watching  is not a great recipe for success.  The ER fellow did it and he was fantastic.

The ER attending sort of gave me the option of going home because she knew I was a physician.   I asked her to recommend whatever she thought was best and to not treat me like a doctor.   She then definitively told me that we had to be admitted.   This human drive to treat the ones we love with care is why physicians shouldn’t treat friends and family.   We try to cut them slack or give them a break and it can be bad medicine.

We get up to our room approximately 4-5 hours after I noticed there was a problem with my son.  That night he continued to decline.   If I had went home, I would have been right back there at 3 am.  He completely stopped eating and had continuous high fevers all night long.   Around 1 am the intern came into my room and told me his spinal fluid was positive for a virus called Enterovirus.     This is a group of viruses that commonly circulates in the summer and can cause cold and flu like symptoms, the dreaded hand foot and mouth disease, or diarrheal disease.   They are also the most common cause of viral meningitis.

My son had enterovirus meningitis.   In a matter of a few hours he went from being a cute and pink snuggly baby to a grey and lethargic baby.

My newborn had an immature immune system.   He got sick fast.   My patients have impaired immune systems, they get sick fast too.   It can be terrifying.   I knew that all of the literature told me he would be OK.  I knew that it said he wouldn’t have any lasting effects.   I knew what to ask.  I knew how to take care of him.

I still broke down and cried my eyes out the minute I left the hospital to go shower.   I still called a friend and broke down in the room when I felt like he wasn’t getting better and I couldn’t communicate my concerns to the team.   I am forever grateful that she was able to come in and be objective and help me.

When my child was sick, I had someone on my side who I trusted without reservation. She helped me communicate when I couldn't articulate my concerns Share on X

This story is long right?  I gave a lot of medical facts.   I knew all of those facts then too.  It was still terrifying and hard.  When my child was sick,  I had someone on my side who I trusted without reservation.  She helped me communicate when I couldn’t articulate my concerns.  Most of my patients’ parents don’t have that luxury.   The magical time mark of when their kid won’t have an impaired immune system can stretch into years.  Once their immune systems are recovered, they have to worry about relapse.

I spent a 5 days in the hospital.  In my hospital.  On the other side of the door.  I left that door   with a respect beyond measure for the parents who have chronically ill kids, kids with life threatening disease, and for the ones who have lost their children.

Be kind, for everyone you meet is fighting a hard battle.

Ian MacLaren