Princess Margaret Hospital and Cystic Fibrosis

I recently spent three days and nights in Princess Margaret Hospital with Paige while she had a tuneup. This is when they give her massive doses of antibiotics through her port and extensive physiotherapy for her Cystic Fibrosis.

This picture shows the first port that was surgically implanted. Before she had this each time she went into PMH for a tuneup she had to go to theatre for a picc line inserting.  She's had them in both sides of her neck, her arms and feet.  The veins in her arms have collapsed.  It was quite distressing for her to go to theatre so it was decided to implant a port.  Unfortunately the original one got blocked so she had to have another one put in at the other side.

The antibiotics are in the syringe and the 'spring infuser' pushes it through the tube into her body.  In this photo she's at our house taking advantage of HITH which stands for 'Hospital in the Home'.  Once a day the physiotherapist visits and puts her through her paces.  CFWA also send Denise to do some physio in the afternoon.  Beth and Steve have been trained to do the medication which frees up the nurses to visit other children also on HITH.

Fortunately we're getting a new children's hospital because the existing one is getting old.  Fridges that were donated have been removed from the rooms because of health and safety issues.  Now all food which was previously stored in the room has to be handed to a nurse and put in a communal fridge/freezer.  When we need something out of it we have to ask for it.  Beth waited nearly an hour for her little esky so that she could put some non dairy butter on Paige's breakfast.  Obviously by the time it was delivered the breakfast had been eaten.

We always knew that food in the cafe was a bit of a joke and Steve said that when he went in at 10.00am  on Saturday food which was to be heated up for lunch time was sitting on a trolley in the kitchen, instead of in a cool room.  They talk about health issues on the ward and they are putting all their customers at risk.  Beth came home for a few hours this afternoon and when she went back she sent this message:

'The options of food at the cafe was corn, broccoli and dry boiled potatoes or plain rice.  No sauce or stew or anything for moisture.  That was it!  When I asked for a veggie burger they said they had no bread.  When I asked for the pattie and salad they said they had no patties.  I'm eating a packet of chips for tea.  Bollocks'.

One of my favourite gripes is that nearly every meal which is delivered to Paige is never hot.  There's no use having a go at anyone because they're lovely people, all doing their best for the children.  Since Paige has become vegan she's had some interesting evening meals but breakfast is the same every day:  hash browns and beans.  She eats the hash browns but not the beans.  They also send her Rice Crispies with soy milk but she doesn't like the milk so the cereal doesn't get eaten.  She has a lot of snacks throughout the day, these are usually chips/water melon/other fruit/rice crackers etc.,  They also give her little packs of cheese which she can't eat because it's made from milk.

The reason we stay with Paige is so that we can attempt to correct any problems before they become bigger problems:  When she was having her nebulizer the nurse set the oxygen level but it was too high resulting in the tube constantly disconnecting from the mouthpiece.  The nurse had gone so we had to turn off the machine and Paige actually reset the level to the correct one.

Another time a nurse came in to give Paige insulin.  When the nurse was told she isn't diabetic she realised she'd been reading the wrong notes.  It's errors like this that can cause big problems or even death.

Then we had the registered nurse trying to flush antibiotics through the incorrect line.  Paige had to tell her to use the one which is specifically for flushing.

I am concerned that mistakes continue to be made.  I wonder if the staff are offered additional training in the correct way to carry out these procedures.