Baby T's Story, Chapter 2- Home to ER to PICU

Tuesday 2/21/12

IB Dad went to work and Baby T seemed weaker.

I called our health care provider and initially got an appointment for Friday (automated system). Then I spoke with the advice nurse and got an appointment with his pediatrician for 3pm later that day.

I got antsy and spoke with my mom and sister,

then decided that T needed care sooner rather than later.

IB Dad came home to care for our other loved one 

while I took Baby T to the local Emergency Room.

We waited for a couple of hours but then were given an ER bed.

 As soon as we got someone who could care for our other children, IB Dad joined me.

At this point Baby T was unable to lift his head and showed little movement in his upper extremities. His cry was weak (more whimper like) and he hadn't fed well in over approx. 24 hours.

The ER Dr ordered the typical barrage of tests (Xray, Catscan, blood/urine labs, etc)

but they all came back normal.

They wished to insert an IV but I requested that more time be given so that I could try to nurse him. At one point the ER doc. entertained the idea of releasing us, but agreed that T's lethargy was of substantial worry. I also requested that a pediatrician see Baby T but hours went by before a duo of them descended upon us.

I wasn't terribly worried until the pediatricians checked T out.

They questioned us extensively (especially regarding any chance that T could've been poisoned!)

but ultimately they couldn't figure out what was wrong with him.

 They warned that it could be a previously undetected neurological/metabolic problem.

It was decided that more tests would be necessary and transport arrangements were made.

They tried (and eventually succeeded) in getting an IV started.

A PICU unit in a hospital 30 minutes away had a bed available so we would be going there.

IB Dad and I were shocked..

 How could he be so very ill so suddenly?

How could they not know what was wrong?

The transport team (2 respiratory therapists, 1 transport pediatrician and 2 EMTs) arrived and assessed Baby T. That's when the transport pediatrician consulted IB Dad and I. He asked if the ER staff had let us know what they suspected was going on.

We told him what we knew (nothing) and then he dropped the "Botulism" bomb on us.

Botulism?!

My initial reaction was terror.

Was he dying?

He didn't ingest honey, we don't even have it in our home.

The pediatrician reassured us that he would be ok in time,

then explained that respiratory support is standard for transport so a nasal canula was given.

They picked up Baby T (at this point completely limp) and put him on the transport stretcher. 

IB Dad and I gathered our things and mindlessly followed our baby and his transport crew.

We felt consumed by helplessness and grief but we were unable to linger.

 At around 6:30pm we said uncertain goodbyes to one another

 and I accompanied T in the ambulance.

IB Dad was going home briefly to check in on our other children,

 then would be joining me at the hospital.

The ride to the PICU hospital isn't terribly long and there was no traffic to stall us

but the ride felt like an eternity.

I knew where we were but felt entirely lost.

Thoughts of guilt consumed me (as is the way when you are a parent). Other people were dropping their lives to be at our aid but I had few answers for them.

My 2 other children being taken care of helped me focus on Baby T, 

but with no timetable, no idea of how long I would be gone I felt uncertain

...i quite plainly had no idea what we were in for.

I remember feeling like a zombie as I followed the stretcher through the hospital.

It seemed like they were walking fast and I scrambled to keep up with them.

I broke down once more when I saw the PICU crib.

I'd seen pictures of sick babies in those cribs, now my baby was becoming one of them.

He'd never even slept in a crib before.

How wrong and surreal it all seemed.

T's arrival attracted alot of attention.

Many doctors, respiratory therapists, neurologists and nurses introduced themselves and proceeded to assess him. No one was especially cheerful or hopeful which fed the growing anxiety I felt.

 A pediatrician explained that his symptoms were pointing to infant botulism and a stool sample would be needed to confirm the diagnosis (unfortunately, constipation is a symptom of botulism so waiting for a sample might cause quite a delay).

He warned that if botulism was confirmed that the road to recovery might be long

 and that Baby T might worsen before showing any signs of improvement.

An anti-toxin could be ordered but might take a few days to arrive.

 Intubation to protect his airway was also very likely.

He was stable at the moment so I got the tour of the PICU floor.

 IB Dad joined us after getting very lost in the unfamiliar city we were transported to (poor guy!)

We were terrified for our little guy but the staff persuaded us to get some rest.

I settled into the chair bed next to Baby T's crib

and IB Dad crashed in the parent room down the hall.

T was ordered NPO (nothing by mouth) before transport so pumping would be mandatory in keeping up my milk supply. My pump kit arrived and I set to work pumping every few hours but stress & exhaustion had robbed me of my supply.

Sad music came from a speaker nearby (later I learned it's a TV channel which provides calming music for healing patients) and it kept setting off tears.

I needed rest but how could I sleep with my baby in this state?

He was weaker and mostly slept but I felt it necessary to touch and talk to him constantly.

I was scared that if I slept that he would disappear entirely since he seemed to have faded so rapidly.

Click here to Continue reading Baby T's Story, Chapter 3