You might notice a slight change in the picture above; Kip doesn’t have a tube up his nose. Plus, he’s obviously modelling for the IV pump catalogue.
Changeover Day this morning – Sarah went home mid-morning and I settled in for a stay of a couple of nights, which turned into a stay of six hours because – drum roll please – we got home today at half past four.
Straight in the door, into Millie’s newly constructed den for a short play before – second drum roll please – a hearty lasagne for everyone!
The team were very happy with Kip’s health over the last few days. While obviously not cured and totally healthy, his kidneys seem to be functioning well, there’s been no sign of infection or illness, no nasties grown on the cultures and his appetite returning makes us think that perhaps the milkshake meals he’d been having for the last few weeks might have been upsetting his guts a bit.
Kip did end up getting a new tube up his nose today though. The previous one had been in just shy of a month and really needed changing, but it was nice to be able to give his skin a couple of hours break from the dressing.
Kip denies he’s brave when dealing with the tube going up his nose – it’s a horrible procedure, really uncomfortable and makes him gag, cough and feel like he’s choking. I have to hug him tightly, partially for reassurance, but mostly to keep him still. I tell him how much longer it will take and keep reminding him to swallow, and the procedure is done in about forty seconds, but it must seem like an eternity for him in that moment.
People often say “kids are resilitent, they soon forget it”, but I can assure you Kip remembers what it’s like long after it’s happened. We have to give him plenty advance warning it’s going to happen, prepare him for the discomfort and reassure him through it. I’m certain that, even in the best case scenario, he’s going to need therapy to deal with the emotional scars this hateful illness leaves.
But with all that, I look at this metre-long, 18kg child who’s not even five yet processing and accepting what he has to go through with a maturity that puts us to shame.