A typical ERT

We get to the multi-storey and park up at about 10am. (The first couple of months I set off really early to arrive at 8am in the hope that the traffic would be better. But with the mornings getting darker I’ve tried a later time and found the wall-to-wall lorries on the M62 to be not quite as bad.)

Pudding in his buggy, we walk to the Children’s Hospital entrance and say hello to the fish on the way in. Pudding knows where we have to press the button for the lifts and again for entry to the ward. Once we’re through those doors the lady on reception waves us through – she recognises us by now.

We head towards the short stay side where the Willink team do the infusions. I let Pudding out the buggy here and he runs to find which bay we are in that day and gives the nurses a big hug each.

Most important job of the day is to choose which DVD he wants to watch first; this time it’s Jungle Book 2. Once that is on, the nurses do a set of observations (obs): temperature from his ear, oxygen levels (a sticky probe attached to his finger) and blood pressure. He’s never liked the last two being done, but accepts them now unless he’s feeling very grumpy.

Next are the pre-medications – Calpol (because he really doesn’t like the taste of the hospital paracetamol) and an anti-histamine – which reduce the chances of him having a reaction to the infusion. It’s a two person job, as otherwise at least one of us will end up being covered in sticky medicine as he bats it away from his mouth.

Then comes the bit he really hates. At home we’ve put Emla cream on the portacath site to numb it; now that has to come off and the gripper needle is put in. I sit on the bed and wrap my arms and legs around him and hold him close, one of the nurses holds any limbs that I’ve missed, and the other works quickly to wash the site and get the needle in. Pudding has always objected to being ‘messed with’ – dressing and undressing can be a bit of a challenge as well as nappy changes – and I hate having to pin him down like this, but accessing the port would be impossible any other way. It is getting easier though as he gets more used to the process and he doesn’t seem to hold it against us once we’re done!

The line attached to the needle is then checked to make sure it’s drawing properly, and if a blood sample is needed that week it can be taken. Then Pudding is released for a bit while the nurses prepare the infusion; two vials of replacement enzyme in a bag of saline. He runs down the corridor to the play room which has got loads of toys and crafts available for children and siblings on the ward. He plays with Peppa Pig for a bit then sits down and colours in a picture before dashing back to show it to the nurses – ‘Ook!’ (Look!) ‘Ta-da!’

IMG_6488Soon it’s time to get him back on the bed. His line is connected to another which runs from the saline bag through a pump. It is started at a slow rate and gradually increased so that the body isn’t flooded with too much all at once. Pudding settles in to watch his film and ask for food every five minutes. I resist as much as possible before giving in. It’s not fun being stuck on a bed for three and a half hours, so we need to keep him happy. Some older children do walk around with their pump, but I’m not sure any of us could face racing down the corridor and stopping him from yanking the line out!

Niamh chivvies me away to get my own lunch and I sit in the Costa downstairs having a panini and reading the paper, very grateful for their wonderful care of us. By the time I get back, Pudding is having his own lunch. Egg sandwich as usual. He can say ‘egg’ really clearly now, and sometimes does the sign too. Flushed Away is on now, and he smiles when he sees the singing slugs.IMG_6497

Obs are still done at regular intervals – he often seems to get a slightly raised temperature towards the end. The infusion finishes at 2.10 but we have to stay until they’re sure that he isn’t reacting badly. Pudding loves this bit – he helps push the pump back to its place and fetches the basin for washing the beds.

His temperature is still higher than it should be, so he gets another dose of Calpol, and we wait some more. By 3.10 it’s back to normal and the gripper needle can come out – only two people needed for that.

No other appointments so we can pack up our stuff and wave goodbye. Until the next week.

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