Pod's Christmas visit

So Pads is operating on 50 microgrammes of fentanyl now. He still had some pain this morning but it calmed down and he still made it to school and a good session with the tutor.
I forgot to mention that Pod Clare was back last week, thanks to LATCH funding. This time it was with a beach-comber art Christmas theme. Here's a sample of what they got up to.

 LATCH have also sent us a small cheque for 'Christmas expenses' which is great!

Up a notch

After a week of Pads repeatedly asking for pain killers, we called the medical team yesterday evening and agreed to add another 12 microgram patch to the dose of fentanyl as the pain was starting to become a worry.

Some of the sunrises this autumn have been stunning but nothing is happening like that this morning... too overcast.

But lo! there breaks a yet more glorious day;
the saints triumphant rise in bright array;
the King of glory passes on his way.
Alleluia, Alleluia!

From earth's wide bounds, from ocean's farthest coast,
through gates of pearl streams in the countless host,
and singing to Father, Son and Holy Ghost:
Alleluia, Alleluia!

William Walsham How, 1864

Warning - not for the sqeamish

Pads had great fun today with his Brain Tumour Support Group chums. They're a really caring group and love to have Padi along. The group gives him a completely different circle of people to be with, whatever they actually get up with, he really enjoys being there.
The idea for visiting 'The Theatrical Makeup' studio emerged after the road-show version were engaged for the LATCH party in January. Pads was not in very good form that day. This time was also better because it was a dedicated workshop with friends. Initially we were concerned because the start time was rather early, 10am, and, while we were late arriving, it was only by 10 minutes.
The next time I saw him at 2pm he was wearing two very gory wounds. Apparently they'd been inflicting these on each other for most of the time I was away! Bearing in mind yesterday's symptoms I left a few paracetamol with the LATCH social workers, Dan and Kaye (big thanks to them!), but he's had no extra pain all day. It is strange how hot he feels sometimes... warm enough this morning to appear downstairs in shorts. This was just as well because it meant he could get a really juicy wound on his shin.
He wasn't long home before heading off to see cousin Llŷr. He was still going strong until after his bath (leaving his fentynal patches on in a warm bath can speed up the drug's release!). It'll be interesting to see what effect all this activity has on him tomorrow.
In other news, Dan says he's had the 'OK' to go on an Ellen MacArthur cruise this summer.

In the frame

Following the OT's assessment visit last week, more 'unwelcome' equipment arrived yesterday. If we were in the US all this would cost a small fortune but now we have two chair frames to select from. These add stable arm-rests either side of a chair or seat that does not already have one (i.e. the loo). Pad does not like these things - they remind him too forcefully of his state.
Last night he tried to swallow the 'P for Patch' reminder again. I'd made a really big one last time: it just about fitted in the dosette box cell. I made it robust using a square of the tough patch packaging. Needless to say, this 'did not go down too well'; normally it would not be safe to give the tablets again but on this occasion they'd not hit the bottom. We've reverted to large yellow paper 'P for Patch' stuck to the outside of the dosett box, so unless he tries to swallow the whole thing...

Happy hours

Thankfully, we've had a really good few days since I last wrote. Christmas day was busy and wonderful with three services (AM, PM and afternoon for the Welsh service) but where better to spend such an auspicious day?
For Boxing day we went to Rhys and Ruth's where the hot tub was once again greatly enjoyed. The picture was taken by someone else - Pads rarely looks as placid as that when I'm pointing a camera his way LOL! We have to be careful with Pads fentanyl patches. If they stay on in the hot water the speed of the drug being released in through the skin is increased. Also we have to re-apply the same ones after the tub and they never stick as well the second time. A few hours after coming out of the tub he was needing paracetamol. How these have any effect at all compared to the other pain relief he's on is a mystery, but they do. With the the tablets swallowed it was time to make a sharp exit and return home to fresh patches.

Yesterday I rose early to join Steve as he aimed to kayak 20 miles of the Monmouth and Brecon Canal for The Joshua Foundation. There are some pictures in this Facebook album.
Pads is spending most of each day in bed except for a couple of focussed hours. For example, he emerged on Tuesday for a family get together at Steve's where he heartily joined in with the 'Name Game'

He's beginning to wonder how come he's still here, catching up with the medics and the rest of us... Harrison McKinion (via his dad's #pray4harrison Tweets) recently came to our attention and his severe and sudden illness was (at least) salutory in showing how quickly things can deteriorate.

Up with the lark

Thought I'd seen a ghost this morning but no, it was 8.30 and Pads was all set for his sleepover trip to Auntie Ruth's (including a dip in the hot tub - we use tegaderm to protect the fentynal patch although the hot water probably accelerates the release of drug... Anyway, it's a great way to get him washed!)
Moli's been off school for 2 days with a 'dizzy bug' but is showing signs of improvement now. They finally hit their fundraising target for the race last Saturday, which had to be abandoned after a couple of hours because the wind was so slack. Still, it was a rare opportunity for them and they generally had a great time together.