Sat 3 Jun 2017 Beginning the next phase

Things are winding down at the hospital, Elise's busy schedule is easing and discussions around discharge have started.

To mark the grand finale, the hospital is having a party! 🎉
To make it extra special... invited members are cooking... in the spirit of Elise's cooking at the hospital, some staff are already sharing ideas. Discussions on dairy free choc brownies, veg pastries and favourite cake flavours. Monash Children's Hosp doesn't have many long-term stayers so a party is in order, to be held in the new Starlight room. Rehab, Rheumatology and ward staff will be the main partygoers - actually it will be a bit of fun for doctors out of their busy, busy days (yes, we see doctors often early in the morning then bump into them at 9pm at night still working ...and many of them have young children at home). Party to be held in a couple of weeks.

This week's creation - avocado and cucumber sushi. It appears that I will never have to buy sushi again :-)

It is nearly time to leave but it is also time to start the next phase of drug treatment. Considering we have been working up to introducing this medicine for months...the hospital has relaxed a bit and forgot to organise it! They would have remembered eventually ;-) but as I am on constant alert - it was sorted....Elise was woken at 12am to have the first dose! Doctor scripts and pharmacy took a little longer than expected :-(

Taking this drug is a bit of a nuisance from a practical point of view. Take it at this time, don't take it with this, have it exactly 12hrs apart etc etc

Mychophenolate warnings

There are warnings stuck all over the packaging. Now we are re-giggling her other med's as some conflict. I think the government must has been extra impressed with this drug - we took the script to the hospital pharmacy so we have our supply at home and the price....

300 tablets for $6.20

I think the market value is about $1/tablet. Stuart double-checked, yes it was $6.20. Wow! It helps to have a Health Care Card for Elise, but that is very cheap...it is an expensive drug but obviously considered essential for transplant organ survivors.

Below is an example of a recent hospital timetable - it is much quieter than previous. Note though, much of what Elise does isn't on this... last week we fitted in a kidney scan, an opthamology appointment, uroanalysis assessment and many impromptu specialist discussions.