Sunday, March 1, 2009


When we first started Josh's Hyoscine patch that help dry secretions, a 1/4 patch was applied to be changed after 3 days. Then it was increased to 1/2 a patch every 3 days. That seemed to be working okay, especially for the first 2 days.

We spoke with the Palliative Care Team, and they suggested 3/4 patch every 3 days. I suggested we try 1/2 patch every 2 days, and that's what they are trying.

A new 1/2 patch was reapplied yesterday, but last night, and today, Josh's noises in his throat (like a rattle when you have a bad cold) are quite bad, and he had a number of big coughs that required suctioning, and once they even needed to remake the bed. Normally, he only requires a couple of suctions throughout the night. But Ive actually had to get up and suction a few times too in the wee hours.

That's concerning, but as of yesterday when the Doctor checked, his chest was clear (of possible infection). So we're not sure whats going on yet.

For a while, Josh was on transpyloric feeds (through nose bypassing stomach) into small intestine, but after having to have it repositioned 3 times (after a special scan determined it's place), it was decided to change it to nasogastric intubation (through nose straight into stomach). That change was done Wednesday night (I think?), and one of the good things with that is that his formula mixes with the normal stomach fluids. He is still on reflux medication just in case though.


Kayla went for a swim in the neighbours pool today - the first time in a month. I felt ill, but I know the neighbours were watching her (and all the other kids in there), and that I cant pass on my fears to the kids. When I went over for a minute, it somehow wasn't so bad to watch - perhaps because it was a different pool. We had been looking for Kane's floaties so he could swim too, but after no luck, decided to ring John in case he knew where they were (which he didn't). I could hear a noises in the background, a child's voice. I asked who that was, and John said it was Josh. I was shocked. It sounded like a normal kind of whimper / sigh. John reckons Jo is having a bit of a hard time breathing. It sounds like he needs suctioning all the time, but when John does it, nothing much comes out...

Kane remembered that the floaties may be at Nanny and Poppy's; the first weekend we were at the hospital, they stayed there, and I thought it would be okay if they swam in their pool, but then I changed my mind. Then, poor Kane, once we worked this out, and I told him he could sit on the edge and shoot his water pistol, he walked out the front, and everyone was coming out of the neighbours yard, finished with swimming!

1 comment:

Anonymous said...

Just wanted to try and leave a comment again..and a different window has come up...hopefully this will are so brave and you are both doing such a great job, everything you can possibly do...I think it is a great idea, taking the kids out, they will love it and I'm sure it will be good for you as well.
All this info is what I hang out to read...I think I need some play therapy too....Still thinking of you guys heaps and I admire your strength and ability to have made it through the last couple of weeks! Lots of love and hugs...ness

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