false start – no drugs today


It didn’t all go quite according to plan.

We were both up early enough and feeling quite calm – I think it was the best start to an infusion day we’ve had yet! Daughter’s friend, coming with us, rang to say the traffic was shocking and she was panicking about holding us up. She arrived and we were rushing out the door but WAIT – where was my car key?

Grabbed daughter’s spare but now we’re leaving rattled rather than calm. Friend rattled by her drive, me because I don’t lose things, daughter because both of us were.

Did that set the tone for the day?

The hospital is close to home – we know the routine, straight to admissions and hello….you’re not booked in today. What?

After her last appointment with the GI there’d been an email, with the date her next infusion was booked for. Yesterday there was the phone call from the IBD nurse. All confirmed. Good to go.

Or not! No booking, no paperwork. IBD nurse not answering phone. GI doc overseas. Now what? You want us to go home and do this again some other time?

Ha! Please meet PROTECTOR MUM.  (or, in superhero language let’s drop the ‘r’)

Three of us go, at Protecto Mum speed, to the dr’s office in the next building and refuse to leave til someone helps us. We’re told ‘ring the IBD nurse’ – tried that; ‘go to building c and see the IBD nurse’ – umm if she’s not answering her phone I’m not racing around another city block to NOT find her in her office!! ‘’Can you please page her or ring her mobile for me?’’ Three people around the desk look astonished at the suggestion but I see one woman at the back of the room pick up her phone and after a quick chat asks us to go to the foyer of building b and the nurse will meet us there.

YAY. It’s a start. It’s now one hour post appointment time.

Nurse suggests going home and coming back when GI doc is back as she needs to sign off on the admission – it’s apparent that this whole messy mess up is an oversight on IBD nurse’s part. She didn’t in fact book my daughter in…  I’m not leaving quietly – I ask her to find another dr to admit her, speak to the head of the department for us.

Fast forward another hour and she’s managed to secure the head of the department’s signature and we’re on our way up to the infusion centre. Why did it take me to push for that though, for everything logical so far today?

Fast forward again – they’ve found us a bed, the cannula is in, the ward nurse starts taking daughter’s obs and WAIT…daughter has a slight temperature. Infusion is off. They will not load her up with more immune suppressing drugs while she’s apparently fighting a virus or harbouring an infection..

So, after much stressing, racing around buildings, advocating (that’s the polite word for it), and raising of blood pressures..please go home and come back some other time. We’d been there long enough for her to actually have had the infusion only to go home exhausted, annoyed, and drug free.

Stay tuned next week for the second attempt at infusion number 4.


and now sleep zzzzzzzzzzzzzzz