4 weeks today

How can time go so fast, yet feel like its dragging?

Last night I "advanced" and now know how to use a finer tube for suctioning, and know how to turn Joeys feeds on and off. :)

Josh didnt have a good night again - lots of suctioning.

The more I think about it, Im sure it must be because the patch was applied just before his shower on Saturday, and he also showered yesterday, and perhaps we got it too wet (since we washed his hair both times too). At least I hope its as simple as that, although the Palliative Team assure us that there is still room to increase how much of the patch he receives. He received a new 1/2 patch today, so we'll watch the amount of secretions for the next 2 days, and go from there.

I was hoping that I would be still there at the hospital when the main Doctor came by, but he hadnt when I left at 1.20pm.

We've seen Josh move / twist his left wrist twice over the last 2 days, which is a new thing (at least we havent seen that before).

His legs are still quite stiff, but I do his exercises every morning, and each evening, and they feel stiff, but less stiff. I know some of you reading this will know what I mean. :)

John and I wrote up a "routine" on Saturday, and I typed it out and printed it out. We know it will change on a regular basis, but it does really help us keep a track of where we're up to. Its just a simple thing for pretty much each hour, so for example:

8.00am - Arm splints off
- Eye drops
- Arm and leg exercises

9.00am - Eyedrops
- Sit upright
- Hamstring stretch

etc until about 11.00pm.

Theres some thing to do every hour, even if its just applying eyedrops, and we keep a seperate chart of everything we do (the nurses really only do his observations during the day; John and I do everything else now, just about). From about 11.00pm (til 8.00am), since the night staff shift starts at 10.30, I let the nurses take over while I sleep. Unless I wake for some reason and know that Josh needs help for something.