900

We think we can do something about the eye pain by covering them with a damp flannel. This provides some relief by cooling and blocking out the light. This morning his first yelp was for neck pain though and so a fentanyl melt went in at 6:50am followed by a diamorph dose at 7:20am. While I was writing this he needed another melt at 9:40am. That's after a hike in the background dose from 720 to 900mg yesterday. These step changes in diamorph have not ruled out the need for breakthrough. What must such episodes of pain be like that they can cut right through all that medication?

We're now taking it in turns to sleep in with Pads which is only marginally different to being in our own room but it does allow for a more instant response and possibly more settled sleep for the other. There's not a lot of space in his room but enough for the SynMat camping mattress I got for Ally years ago but has only now slept on - it's hardly any different to our normal bed (which has a memory foam topper!)
We've put everyone on notice, smalls included, that we do not think he's got long left... but of course these things can defy our expectations.

720

Yesterday Padi had three doses of breakthrough and it was decided to up the driver dose to 720mg this morning, and change the needle site in case that was not absorbing very well. That puts the breakthrough dose to 360 sevradol or 120 buccal diamorph. The sevradol comes in various denominations of tablet but 360 means 8 of them in one gulp! Just as well he's brilliant at taking them. It also means that we can run down our supply very quickly, something that occasionally seems to escape the attention of the person writing the scrip.
This morning he woke up from a deep sleep at 7:45am asking for pain killers, for sharp pain in his eye and neck. We gave the diamorph at 8am and midazolam (which helps calm him) at 8:30am. By 8:45am he was asking for more relief and so another diamorph dose went in at 8:45am. This seemed to ward off the pain for a while until at noon he had a sevradol dose and another whack of diamorph at 2:30pm. Having drawn up another dose of diamorph at 4:30pm, we thought to try with a couple of humble paracetamol, and that was the last breakthrough administered. Not one of his most comfortable days.

Buccally

Padi continues very content and mostly comfortable. He was gearing up for a bath when Ally remembered his school chums were due to visit - they're (all 6 of them) having a great chat as I type this.
Yesterday we administered the first buccal dose of breakthrough. That means dissolving a dose of diamorph in a tiny amount of water and squirting it into Padi's cheek. When given the option this morning of the sevradol or buccal diamorph he went for the latter, even though it tastes very bitter. The taste can be masked by a sweet or by using something like orange juice instead. The main benefit is the rapid absorption into the blood stream which is great when the pain is coming on strongly, which it does sporadically perhaps once or twice every couple of days.