This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Friday, March 4, 2011

Joel Update

Just a short update for those who are worried about Joel. Today he was no better, and still seemed to be in quite a bit of discomfort. It is discouraging.

But Palliative Care came over this morning and they helped me feel ... more empowered? I'm not sure how to explain it. We discussed the options, going to hospital vs staying home. I felt better knowing that they saw how he looked and even his distress, and agreed that it was not too likely that a hospital visit would do much for us, and would be quite distressing itself.

We also discussed Joel's morphine, and how to up his dose to provide more relief. I was happy and very comfortable with their suggestions, because I see Joel every day and know that he tolerates morphine extremely well and that it is an A1 pain relief option for him. I feel better knowing I can safely make him more comfortable.

The plan is to ride out the weekend and keep him comfy with regular doses of morphine. If I feel the problem is drastically worsening, then we'll take Joel in to hospital. Otherwise, we'll re-evaluate the plan next week if we don't see any improvement.

I'm very relieved about this all. Once we take Joel in to hospital, we set in motion a bunch of procedures which are basically unavoidable. They insert a catheter and take a urine sample (even though we are sure it's not a UTI, as he just came off an antibiotic yesterday), they take blood work, they would likely x-ray his whole body, even though they usually can't/don't cast him. It's long, it's uncomfortable, people keep coming in to press his abdomen while he's trying to rest. His meds are disrupted, his feedings are disrupted, it's just no fun.

Right now his breathing is great. He is pooping and peeing just fine. He just ended antibiotics and he starts the next round in two days. It just doesn't seem like it would be worth it to go in.

And I feel better knowing the Team saw him and agree that I'm not doing any thing ridiculous or crazy, that it all makes sense.

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