When our son, Gianni, was five weeks old, he became critically ill with Infant
Botulism.
The morning of February 15th, 2012, Gianni was unable to suck on his
bottle.
I could tell he was hungry, but I didn't know why he could not suck. I
called his doctor immediately.
The best way I could describe his symptom to the
physicians office was
that it was almost like he "forgot how to suck".
The
doctor wasn't exactly sure what was wrong,
but knew it was something serious.
He
had us sent in a Medical Response Team ambulance to Akron Children's Hospital,
which was about an hour and a half away from our home in Pennsylvania.
The doctors were considering several illnesses in Gianni's case,
so he had numerous tests done while he was in the
hospital.
They performed urine tests, blood tests, several MRI's and CT scans, three
spinal taps, a test on the muscles called Electromyography, and an EEG scan on
the brain.
A majority of the test were coming back negative, yet Gianni was becoming
weaker and weaker,
to the point of not being able to move what so ever.
The second night in Akron Children's was the worst.
We were standing
next to Gianni's bed as the neurologist came in to check him out.
As he scooted
Gianni upward,
Gianni quit breathing.
He was so weak that he could not hold his own
airway open.
The nurse hit the "staff assist" button, and within seconds,
the
room was filled with doctors and nurses.
That was the worst thing I've ever
seen. I was crying hysterically.
Luckily the nurses used a bag valve mask to
help save him.
The doctors asked us to take a walk for a little bit while they
intubated him.
 |
| Gianni intubated at Akron Children's |
The hospital began doing another test to check for Infant Botulism.
But
unfortunately, the test needed a specific amount of stool to be collected and
sent away,
and another symptom of Botulism is constipation,
so it was going to
take some time before we would know for sure.
But as Akron Children's Doctors communicated with the California Department of Public Health Infant Botulism
Treatment and Prevention Program they there were certain,
without
needing test results, that Gianni had Infant Botulism.
So over-night a medicine
called Baby Big was flown over from California to Ohio.
The medicine was immediately given to Gianni.
The medicine was immediately given to Gianni.
Within days, it seemed
Gianni was slowly making progress.
He would slowly lift a finger or budge his
leg. When I would get really sad and feeling helpless,
I would go over to him
and tickle his foot because he would move his toes.
It gave me hope that he was
going to get better.
Gianni was intubated for about three weeks.
Shortly after he was
extubated, we got to leave the ICU.
And about that same time was when test
results came back stating that
he did, in fact, have Infant Botulism.
 |
| Baby Gianni extubated and approx. 8 weeks old |
I was
adamant that the doctors to unplug his NG feeding tube, so that he would get
hungry allowing me to feed him with a bottle to see how well his sucking ability
was progressing.
I hoping he would be able to come home without the NG tube.
After
much stressing to the doctors, they finally gave in and quit feeding through the
NG.
And Gianni did amazing with his bottle!
When we left the hospital in March, Gianni was good as new.
 |
| Baby Gianni at approx. 4 months old |
We will
probably never know how he got Infant Botulism,
but all we DO know is that he's
such a happy, healthy baby now.
 |
| Gianni at 1 year old (nearing one year post-IB)! |
