It started out much better.

She was a little tired, a little run down

but happy and looking forward to this day.

It was supposed to go;

IVIG day

visit from the good doctor

ear check

given the all clear

all plans and paperwork done and firmly in place,

in case of emergency

up to the infusion lounge to hand over the pump,

be discharged from the program

and to give our thanks

for the tireless work

of ten or so wonderful nurses

over the last twenty weeks.

This is how it went:

IVIG day

suddenly halted by the broken I - med smashing to the floor

about 3/4 of the way through the infusion

tearing away the line from the port,

breaking the sterile field.

Incident forms and lots of cussing.

Loss of remaining IVIG.

The good doctor visits

ear check

all clear

but

she has the beginnings of a cold

so

IV antibiotics for another week

to cover her

and him

because there is no paperwork

and no plans in place.

When Ivy realises she has to be accessed again

she begins to sob

all the way to the infusion lounge.

No amount of soothing helps.

Not even plain chips help.

It feels like the longest walk of my life.

Explain to the nurses (who were not expecting a continuation either and therefore have not ordered more antibiotics)

Wait.

Ivy is clearly anxious.

Access fails four times.

Nurse declares Ivy’s site too traumatised (true) and that access has become increasingly harder over the last month (also true)

Ivy weeps.

Tells me she is tired and she just wants to go home.

Nurse suggests ringing the paed and explaining.

Paed is phoned.

No response.

Infectious diseases doctor is phoned.

He then phones the paed.

No response.

Finally Infectious diseases doctor comes down

assesses Ivy’s site to be too traumatised

and says Ivy can be discharged from the program.

He will take responsibility.

Meaning?

I’m not sure, really.

Ivy is too exhausted to walk

and the IVIG after effects have started.

I thank the nurse and the doctor profusely.

Hand over some Ivy -  selected, Ivy - approved chocolates

return the pump

and leave.

Ivy falls asleep in my arms

that are also carrying two bags

a camera

and a pair of discarded shoes that will not fit in the above mentioned bags.

(Those darn bags are never big enough).

Ivy sleeps all the way home.

Cries throughout her first real bath in twenty weeks

declares herself sick

and skips dinner.

I’m feeling…

like I did twenty weeks ago.

The teenagers have already placed bets on how long Ivy will last

and I swear

It didn’t start off like this.