Things have been ticking along at home.
We cut Pete's day-time morphine out yesterday, and he was a bit more like himself. We are still doing it at night, and he's sleeping a lot better, which makes me wonder if a lot of his night-time waki...ng was related to pain.
I usually pride myself on never skipping one of Pete's meds, but I've been struggling a to get them all in at the right times. At the mo he's on morphine, Pamol, fluconazole, dexamethasone, Cotrimoxazole, lactulose, movical, Zofran, metoclopramide and probiotics; and it's the Pamol that I keep doing late (grrr!).
We can't wait to finish the dexamethasone tonight, as it's the steroids that make him feel the worst, and he continually wants head-rubs to try and sooth his aching head.
A nurse has been coming to do Pete's daily Ara-C leg injections (we couldn't use the insuflon in the end) and his poor wee legs are getting all bruised with his low platelets. The nausea and vomiting has been a problem too.
We are using the Countdown Action cards as rewards for the shots. Pete loves them, and a huge Thank You to everyone who is sending the cards to him. Enzo and I just came home from our early-morning walk to find a pile of them in the letter box. Very exciting!
We saw Dr Fab on Thursday, and he said to increase the duration of the steroids (groan! But also a good idea, I know), and he suggested that we start the Erwinase injections on Monday, even though there is still another course of Ara-C injections to go. So Monday will be a busy day with that and most likely a platelet transfusion. You have to wait for 2 hours after the Erwinase, as it can cause pretty scary reactions. The Erwinase is a nasty deep-muscle injection, a lot more painful than the Ara-C ones. I think it's 2 injections at the same time in both legs. So we won't be looking forward to those.
We have been having some fun family times. We all went out to Bethells yesterday, and Pete loved being chased by the waves in the 4-way tunnels. It was just a quick visit, as Pete gets worn-out fast. But it's great making more happy memories.
Thanks so much to the lovely people who have visited to spend time with Pete, and for the amazing meals. We are being thoroughly spoilt.
