Almost feels like we are a normal family again!


Day two at home started well. The meds regime is going smoothly and the children seem happy to all be home together.
We were warned by Nikki in our discharge talk to be prepared for if to take Herbie a few days to adjust to having his siblings back in the picture and possible sensory overload or wanting his own way.

The children woke and came down to watch Lego movie ( one of their fave films) and peace reigned. Breakfast passed uneventfully until the film ended and the others said they didn’t want to watch it again. Herbie hit the roof. The steroids can change his mood as well as his appetite and we have already seen him have total steroid rage. This was no exception. The other three walked away leaving me to pick up the pieces.
After about 30-35 minutes he finally calmed down, however it might have had something to do with us all letting him watch the Lego movie AGAIN!

Sarah, our community nurse, arrived at 2pm for his iv’s. As you know Small has a double lumen Hickman line. This line actual goes to the heart so it is vital to keep it free from bacteria.

Hickman line position
Hickman line position

In GOSH they use something called para film to wrap around the end of each lumen to help keep bugs out. We came home with a stash of it for the community nurses to use. Sarah however came with her own bug free caps. They appeared to be much easier to use and much less sticky. I assume they are more costly though as every child you see in parts of GOSH have single, double or even triple Hickman lines. I’m guessing para film is the cheaper option.
Apparently the JR’s paediatric oncology ward, Kamran’s’ use them . Herbie seemed very pleased with them!

We went to my mum and dads briefly today. How lovely to all get into the car and go somewhere as a family! First time in almost 10 weeks!. Herbie loved going out. My mum was impressed with his reading! Well done Victoria and also Helen at hospital school.
When we got home he was a little grumpy! More Roid Rage but he finally chilled out (after a lot of shouting! )

Roid rage episodes…Don’t think we have seen the last of them!

2 thoughts on “Almost feels like we are a normal family again!”

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