Baby T's Story, Chapter 3- Intubated

Wednesday 2/22/12

Curtains divide the four beds in our area of the PICU.

Two private rooms flank each end but we've occupied the last stall, the floor is full.

Privacy is an illusion.
Rounds are done in hushed voices but Baby T's case has attracted a crowd with heads peaking over others to catch a glimpse and many doctors/residents wish to assess/reassess him.   
We walk them through his 24 hour decline before the ER visit and answer the same questions.

The plan is to continue to offer supportive care while the BabyBIG (the antitoxin) has been ordered.

T no longer opens his eyes, he doesn't move and his response to pain is minimal.

 I don't understand at this point but he is paralyzed.
A toxin has invaded his system, flourished and blocked his ability to move.
Paralysis typically moves from the head down.

His brain is not affected meaning he can feel happy/sad/scared/pain but he just cannot move.

Supportive care is the standard in treatment for botulism.

Essentially, there is no time frame for recovery, each baby is different

Getting the BabyBIG sooner can aid in a swifter recovery but does not ensure any certain

time frame. BabyBIG rids the body of the toxin allowing the neuro-pathways to reconnect.

The decision to intubate is made during morning rounds. 

They are worried that his airway may become compromised by his inability to cough/gag thus putting him at risk for aspiration.

This is the first procedure that we have to leave for.

It breaks our hearts to leave him for what must be a scary intervention,

but we take time to kiss him/let him know that we love him.

Then we are led away.

IB Dad and I take the opportunity to update our family.

When we're reunited with him he has gained another set of monitors and a vent tube plus an NJ tube (a nasal feeding tube inserted beyond the stomach to decrease the chance of vomiting).

He is sedated from the procedure.

The machine is assisting his breathing, they explain the settings.

Xrays are ordered to make sure the NJ tube and Vent tubes are properly placed.

The NJ has to be adjusted many times.

Seeing our baby like this is unbearable.
IB Dad and I struggle with the weight of the situation.

Baby T looks so much more vulnerable when intubated.

The machines relay if T is stressed or unhappy, and my addiction to watching them begins.

Every call or text to my cell phone brings my screen saver to my attention. 

The baby smiling back at me from my cell phone looks nothing

like the frail, bedridden infant in front of me. 

Babies cry in other beds, I find myself wishing to hear Baby T cry . . .

something I haven't wished for since his first breath.

With T stable once more I leave for a brief trip home.

My heart is left behind in the hospital.

I navigate myself home somehow and encounter the harshness that life is going on everywhere else. Our alternate universe is left behind once you leave the PICU floor yet a haze covers me.

I cannot escape. I cannot fix my baby.  

This is reality.

 My parents arrive (they drove straight from their home 15 hours away).

My sister and IB Dad's mother are caring for our girls.

My friends are helping them navigate our old life.

I feel I cannot focus on much else and am grateful that my immediate worries have been remedied. Pumping negates my schedule plus I am eager to return to Baby T.

 IB Dad and his family stay in the PICU. 

Baby T is tormented for hours as they try to find a place for an IV

while also attempting blood draws for labs.

Even the most experienced hospitalist has trouble.

A PIC line is attempted for a while. An ultrasound is brought in to assist but no remedy is found.
His chubbiness has always caused us to giggle,

we never imagined that it would become such a liability.

When I return there are multiple pokes in his ankles, feet, wrists, arms, fingers and toes.

A central line is debated, finally they get what they need

and more serious intervention has been avoided.

 IB Dad and I have a late night with Baby T.

I cannot sleep next to him while he is intubated so IB Dad returns home 

(one parent per patient in the sleeping room).

Between pumping every three hours and my frequent visits to Baby T, sleep is not plentiful.

Continue Reading Baby T's Story, Chapter 4