Day 23

What a wonderful day today has been! It was just so amazing to spend the night cuddled next to my hubby. The weather God was good to us this morning by gracing us with some beautiful rain while we were sleeping in and afterwards, Shane cooked me pancakes! What a man! 

We did wake up at 6am and at that time, Shane decided to get his "chat" on. When he's on steroids, there are many moments when he can't sleep, and he just endlessly talks about stuff. There is no holding him back right now. There is so much to live for! He has so many wonderful ideas and is so keen to put them into action. By 6.30am he had our day planned and I was asleep again.

By the time we were up at 9am, it was a very different story. 

Yesterday they reduced Shane's steroid, Prednisolone, by 50mg - a whopping great big dose. He's now still on 120mg a day, but such a change really takes it out of Shane. He becomes so fatigued even the thought of getting off the lounge to go to the bathroom seems impossible. He really needs to be supported during these days as he's just too tired to really care for himself. He has learned to preserve energy while doing things like showering by sitting down, but its still exhausting. 

So our plans went out the window. I was expecting this result today, so I was happy to just play it all by ear. Tomorrow I am sure will be much the same. I can't tell you how disappointed Shane gets on these days:( 

Getting home last night was interesting. After the stress of the afternoon, we both felt a bit out of sorts, but so relieved with the outcome. Then last night I had the fun job of sorting out Shane's medications! This is one of the most challenging parts of returning home. There is a huge list of medications that need to be taken at certain times, with or without food. For some meds we have to set alarms for to ensure they are taken at the right time. 

But of course this isn't the first time Shane has been discharged from hospital, and each time they give us all the meds he needs. Some are the same as previous discharges, others a very different. So last night I had the fun job of sorting out all of the new and older meds to ensure he's on the right doses for now, but finishing up the older meds before opening new packets. I almost need a medical degree (or should be given one for recognition of prior learning!) to sort out this lot! 

Medications are one of our biggest expenses. They cost us a small fortune. Last year fortunately we reached the safety net limit which means we got a pension rate for medications, but as we're in the new year, we start all over again. Fortunately for us, Queensland Health subsidise some medications, so we don't pay as much as they are worth. This is such a relief as I have no idea how we would pay for it all otherwise. Here is a copy of the list of Medications Shane took home with him. I am surprised he can fit food in as well as all these pills!

So now we just settle into our routine and gradually build up Shane's fitness and body weight. He is able to eat more food as we're finding some things don't taste so bad. So far we have found that pumpkin, broccoli, fanta and strawberry milk are ok. I just have to make sure that he doesn't get sick of them being on regular rotation!

xx