| |
In late August/early September 1998, at not quite 19 months, the
world changed. It started on a Friday with a really bad sounding
cough. Over the weekend, at the advice of the peds office, I
treated him with over the counter meds. Monday morning, I took
him in to the pediatrician, as the cough had become more persistent.
Our peds office had just been bought out by the local hospital
(NOT always a good thing), and the new pediatrician was on vacation,
so we had a 'fresh from med school' doctor, Elizabeth Cox. She
did a quick exam of Brandon and determined him to be suffering
seasonal allergies. She sent us home with recommendations of
over the counter meds. That night, Brandon's condition was significantly
worse. I couldn't get him to eat anything, so I gave him a soft
cookie to try to coax him to eat. It melted in his mouth. He
never chewed, he never swallowed. Suspecting a sore throat,
I took him back to the peds office. After being weighed in by
the very aggravated nurse, the same pediatrician as the day
before told me that I was overreacting. Brandon only needed
rest and over the counter meds, to take him home and do not
bring him back before Thursday. He will get worse before he
gets better, she said. Between that Tuesday morning and lunch
that same day, Brandon's condition just flew downhill. My husband
came home at lunch, took one look at Brandon and said, "I don't
want to upset you, but he looks like he's dead." I made an appointment
with a new pediatrics office. Over the next 2 days, I took Brandon
in to that office 4 times. Every time, they were treating him
with more and more stringent medications. The fourth visit,
on Thursday morning, was prompted because by 11am, Brandon was
still asleep. I woke him to go back to the peds office, and
noticed his heart rate was about double what it was normally.
As soon as I got to the peds office, Dr. Lamar had the nurse
call an ambulance. Brandon's heart rate was at 200 beats per
minute. I'll never forget on the ambulance ride to Atlanta,
the driver told me that should Brandon go into cardiac arrest,
they would have to stop at the closest hospital to have him
stabilized. The next thing I remember is sitting in a small
ER room at Scottish Rite (now Children's Health Care of Atlanta)
with Brandon in my arms while 4 or 5 specialists and 3 or 4
nurses flew around us. I was scared out of my mind. I don't
remember anything that was said to me, I just signed every consent
form put in front of me so they could find out what was wrong
with the center of my universe (Brandon). Brandon's dad arrived
maybe half an hour to 45 minutes after I did, I don't know.
CAT scans were inconclusive, and the results from the spinal
tap were days out. Neurologists, consulting with infectious
disease specialists, began treating for Herpes Simplex Encephalitis.
Acyclovir was administered immediately. Brandon was comatose
by early that Thursday evening. He remained comatose in ICU
for 3 days. After 3 days he was moved to Acute Care. He was
comatose for 8 days more. When he came out of the coma, he was
less able than a newborn in that he could not suck or swallow.
He screamed and cried constantly for the next several days.
He was only content when I stood up and held him. My only relief
came when meds were administered and he subsequently would fall
asleep. (We eventually figured out he was suffering an unbearable
headache.) Seizures began almost immediately after he came out
of the coma, as did anti-seizure meds. Brandon remained in the
hospital for a total of 6 weeks, the last 2 1/2 of which he
was in the medical rehab unit. By the time we left, Brandon
was able to walk and swallow applesauce.
The next few months were the hardest. I didn't know what was
going on, I emotionally could not handle the situation. Brandon
started OT and PT (once weekly) and ST (5 to 8 times weekly).
This only lasted about 8 months, at which point my husband decided
the speech therapist was more interested in when insurance was
going to pay her (they were running 60 - 90 days because they
were going through a buyout). We relocated to a Children's Healthcare
satellite about an hour away for speech once a week. Brandon's
motor skills had improved in that 8 month period. My rightie
was now a leftie. He could grab with his left hand, and even
could perform some fine motor tasks with his left hand. His
right hand was coming along much slower. PT had improved to
the point where we went only once monthly.
After about a year, I withdrew Brandon from PT and OT altogether.
This was more a personal decision than anything. I had been
through all OT and PT sessions with Brandon and knew what to
work on. I also had a nephew 10 months younger than Brandon
who was my guide. Honestly, the ultra rigorous schedule of the
first 8 months had worn me out.
Brandon continued to see only the ST once weekly, with lots
of structured play at home, until the fall of 2000, at age 3
1/2. He then started Special Ed PreK through the school system.
It was apparent to me that Brandon's cognitive skills were age
appropriate. But all the tests he was ever administered were
designed for individuals who could communicate, so convincing
the school system took time. Fortunately, Brandon had the same
PreK teacher for the next 2 years, until this past May 2002.
Based on her experience with Brandon, she recommended that Brandon
be given regular ed exposure in his Kindergarten year (beginning
this past August). Brandon began with 1/2 an hour a day. That
lasted 2 weeks. He now has only about 1/2 an hour in his Special
Ed homeroom. This is a victory in itself.
However, Brandon still does not talk. (I would give away my
left arm, I think, to have him say "Mom" in his own voice.)
Therefore, he does go to a 1st/2nd grade Special Ed Language
Arts class because the regular ed teacher does not have training
in teaching a nonverbal child how to read. We also deal with
seizures, still. Partial Complex. We can pretty much control
them with meds. Other than that, Brandon is normal. How sweet
that word is to me. One of the neuros Brandon saw in the hospital
had told me Brandon would never be normal again.
The last 4 1/2 years have been indescribable. I divorced Brandon's
dad in April 2001 because, in summation, his manner of dealing
with this situation was not compatible with my own. (Optimism
and Pessimism do not go hand in hand.) I needed to be supported
on the one day each month I broke down. I needed, that one day,
a reinforcing opinion of hope and assurance that he could not
give. He was a good husband and it was the hardest decision
I've ever made. I am remarried to someone who knows Brandon
WILL get better and Brandon WILL talk and who reminds me of
that when I need it.
By the way, maybe the neuro was right... Brandon will never
be normal. He's too special and too beautiful to be normal.
Leah Richardson
Georgia, U.S.A.
Posted: January 7, 2003
|
|
 |
