Baby T's Story, Chapter 4- Big Baby meet BabyBIG

Thursday 2/23/12

The routine of PICU life become more apparent as the days go on.

Every 2 hours, or so, the nurse takes vitals and moves Baby T 

(switching sides while immobile is important!).

Our nurses typically have one other patient so if we need something while our nurse is absent,

we can flag the nurse or another available nurse will help us.

Shifts change at 7am and 7pm, the new nurse is given the latest news and current care-plan.

The pediatricians visit before rounds and throughout the day.

Rounds occur with the pediatric care team (peds, neurology, residents, physical therapy, charge nurses & respiratory therapists) at 9am. Rounds is basically a very detailed report of each patients health.
 Big decisions are discussed and questions answered during rounds.
 I often record rounds on my phone so that IB Dad can hear the dr’s comments later.

Neurology & physical therapy usually visit in the morning.

Respiratory therapists visit T often to monitor his breathing assistance.

PICU life forces adjustments. It is odd to need security clearance to see your child and need to wash your hands whenever in their proximity. IB Dad and I help where we can (and beyond) but even the simplest diaper change requires a nurse or RT’s assistance.

I feel I’m almost as needy as Baby T since I need access to the “pump” room across the hall every 2-3 hours. Pumping involves a whole process including cleaning the pump parts and labeling/pouring milk then requesting that it be ran to the freezer. It's a chore to pump but I don't consider it an option as I'm committed to exclusively breastfeeding Baby T as my other children were.

I feel lucky that my supply has improved despite the stress that has become a part of my daily life.

I greet Baby T's nurse change at 7am with the news that the BabyBIG arrived earlier that morning and was immediately injected intravenously. BabyBIG is a drug which neutralizes the botulism toxin thus allowing the body to resume communication so that the muscles can contract again.
It feels much better to know that the anti-toxin is now working its way through his body.

Now we wait for him to come back around.

Also new this morning, Baby T begins continuous NJ feeds of breastmilk.  The tube in his nose goes into his intestine thus enabling him to receive nutrition (since he cannot breastfeed).

 He is started at 10 ml/hr of my breastmilk, and gradually increased to 50 ml/hr (his goal).

It feels good that they can finally start using my milk. I feel like he is receiving all the hard work I've put into pumping, with the 3am pumping session being especially hard.
Besides reading him books, talking to him about his sisters and how much everyone care about him, I'm finally able to do something for him that no one else can.
Provide him my milk.

Fevers, high respiratory rate and high heart rate are all causing more anxious moments. A stool sample is collected and later comes back to confirm the diagnosis, Type A Infant Botulism.

More blood is drawn as the day goes on.
The dr’s want to rule out flu, RSV, & “C. difficil” which can cause diarrhea.
The secretions become thicker and yellow so a test for pneumonia is sent.
They begin antibiotics intravenously as a precaution and increase the frequency of “CPT” (cardiopulmonary physical therapy) done by the respiratory therapists. CPT involves the RT knocking on his chest wall for 5 minutes or so to loosen mucous.

T is moving a little more and even gives his aunt  (my twin sister) a smile later.

Another roller coaster night occurs with Baby T's fevers

and high respiratory rate putting us all on edge.

Click to continue reading Baby T's Story, Chapter 5