Friday, February 20, 2009


Last night, two of our friends came in. It was really hard for me to see a strong man get visibly emotional looking at Josh. Here I was trying to placate him! :)

We had the doctors through this morning, and I mentioned about the pressure sore on the back of Joshy's head, and how the patch had not been replaced, to my knowledge, since they put it on at about day 4 or 5 (its now day 21). The seemed a bit surprised by that and are looking in to it. As they do.

Then the Palliative Care Team stopped by to remind us that they'll be stopping the morphine later today, after weaning him off the last day or so. They also said that they will be recommending the Hyoscine patch be increased from a quarter to half, as Joshy's secretions didn't lessen overnight, and in fact had to be suctioned more regularly. We were also talking about keeping the kids involved, and I mentioned I was going to get them to make a really easy mobile for Josh to look at; something that can be changed regularly. They said it was a good idea, but then a thought struck me, s I asked the question: Can he even see or hear? Their answer floored me: We think it to be highly unlikely. So what? He can only feel our touch? And that's all he "is"? I vaguely remember the neurologist saying that this was a possibility days ago, but no one had actually said whether Josh could or couldn't see or hear. Ive asked for tests or something, that can determine this. I need to know.

Not long after, we spoke with a Social Worker. This was quite weird in a way, because while I'm sure she has heard many stories, I (or we) still have a good 10 years life experience on her. Admittedly, I felt better after talking.

We gave Joshy a wash / shower on the special shower bed, and that was quite different and also a step by step process. It looked uncomfy and seemd to take too long (time wise).

I also actually watched the nurse do suctioning today, so that was a first for me, since normally I leave the room, or ocassionally, hold on to Joshy's leg and keep my head down.

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