End of the week

Josh had his long line (PICC) put in on Wednesday afternoon, and when I returned to the hospital in the evening, he'd not long been back, and was still a little sleepy. The procedure normally takes around 15 to 30 minutes, and sometimes can be done in a patients room if the environment is sterile enough, but for Josh, it took over an hour.

The idea is to give him the nutrients he needs through this long line, as well as feeding him formula through the TP, but gradually increase the amount he receives through the TP and lessen the amount through the long line (whew!). This morning, he was up to 22ml per hour through his TP, which is the volume he has been tolerating anyhow, and it was increased to 24ml at 8.30am. 15 minutes later, he started vomitting! His feeds were turned off until the Doctors decided what to do... it always seems to reach 22ml when theres a problem. A few hours later it was decided to start the TP feeds again at 15ml, and gradually, over the rest of today and night, reach 22ml again, and then keep the feeds at 22ml until his PEG operation.

This operation is happening on the 2nd April (brought forward from the 6th). Again, we've been told, because of the condition Josh is in, it's quite risky, and can normally take around 3 to 4 hours. If his PICC placement was anything to go by, I hope it doesn't go too much longer than expected.

We had a visit from Liz today. She is lovely, and a resource of information. There are things we do for Josh of course, like singing, and reading, talking, walks, etc etc, but she showed us other things to do to stimulate Josh and also gave suggestions on many different things like disco balls for with lights, and maracas, and play mats, and using satin for smooth and a loofah for rough etc. The kinds of thing where once you hear it you think "Oh yeh! Why didn't I think of that?" We also think we need to be a tad more pushy requesting items for Josh like a different chair to the one he's in for example. Its too cumbersome to push around.

The OT showed me some "basic" items that we may be given to use for when Josh comes home, including a couple of shower chairs, and we trialled one from a company called Leckey. And, it was yellow! Joshys favourite colour! We soon found out its perks and things that weren't so great, but its good to be able to get an idea of these things before going home.

We still have a steady stream of visitors, including another visit from one of our fav nurses from PICU, who visits from time to time, which is very sweet.

It's Bandage Bear week this week at the hospital, and Wednesday night, Kayla meekly stood next to the bear himself, while Sara Groen from channel 7 read the weather. John was down in Joshy's room at the time, but they saw Kayla on the tele! :-)

A couple of times now, during Joshy's physio session in the afternoon (when I'm not there), Joey has been placed on his tummy. Yesterday, John said Josh was sooo relaxed, he was like jelly. So much so, he slept until 8.30pm!' It was either due to that, or the Baclofen; probably a little of both.

I also finally bought myself a book light, so that late at night, when I read, I don't have to use the bathroom light to see what I'm reading!

We found out today through our Social Worker that one of the services that can be provided is a massage for John and myself! Imagine that? It is available on Fridays apparently, so next Friday, I'm there!

Bought Josh some watermelon flavoured lip gloss from The Bodyshop; we'll just place a smidge on his lips. If they had a tomato sauce flavour, I'm sure that would get a reaction!