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!

Saturday, March 19, 2011

Joel Update

Before I go on to Joel, I want to mention something. Some of you have read about my friend Jolene here on my blog, or heard me speak about her. My blog has a link to hers, so some of you may have already read this. But yesterday her little girl, Ashley, passed away. Please keep the family in your prayers. Jolene and Alex. Big brother, Brodie. Hope, who is still a bit sick too. and little baby, Mira. They have been through so much, and now a new and very difficult stage has started for them.

And now, about Joel. Last night Joel's oxygen needs really shot up. We could barely meet them with the O2 concentrator, as it only goes up to 5 l. of O2. He made it through the night, but this morning, even the 5 l. was barely covering his needs.

So we decided to bring him in to the hospital. It just "felt right" as a decision. And when we brought him in and he had chest x-rays, it was bad news. The doctor showed me the x-ray. His right lung, from top to bottom, was just one solid, milky-white mass. I was surprised. I think I expected to find out that he had some white patches on his lungs. But I hadn't expected it to look anything like that bad.

This does not mean I can tell you that Joel has only 48 hours to live, or that he has 2 weeks, or that he might not even get better. We just can't tell. But what it does mean is that Joel is very seriously ill. So ill, that I would have to say that there is more likelihood that he will NOT get better from this illness, then that he will. It is in the realm of the possible for him to get better. But I don't think it is in the realm of what is probable. Only time will tell.

We discussed our options once again. We discussed admitting Joel to the hospital, vs bringing him home. And once again, the only conclusion was that the only thing they could do for Joel there that we could not, was to hook him up to a ventilator if his O2 needs overwhelmed him ability.

At this time, Steve and I once again felt that we would not opt to intubate Joel. The doctor could not tell us if it would help Joel or not. It might keep him alive, but that did not mean it would help Joel get better. Intubating such a small little one is difficult. My father can attest to how uncomfortable it is. And it would mean running a big risk that Joel would die in the hospital, instead of at home, after lots of comfy cuddles.

A year ago, we would have intubated Joel. But Joel is not where he was a year ago. Even before this all started. He's been moving less. He's been babbling less. He's had less energy. And then there's the way his eyes haven't been able to shake those ugly bumps. Last year, I would have been confident he could come off of a ventilator. Today I was not sure. And we didn't want to risk that.

I'm glad we took Joel in to the hospital. It was good to really know what was going on in his body, even though it hurt to see the X-ray. Plus, the hospital could send us home with a suction machine (because I had foolishly returned ours, since we hadn't used it in the 8 months we had it!) and a suction machine is helpful in helping Joel be comfortable with all the guck in his airway. We also got a script for a different antibiotic. One more targeted for chest infections, and then we'll still keep him on the other antibiotic, the one for his eyes. This way his coverage for infections has a bit of overlap and is much broader in scope.

Of course, the antibiotics might not help at all, because this could very likely be a viral infection. Since it would take 2 days to get the blood work done that would tell us what exact bacterial infection it might be, if bacterial it were, we decided to just go with an antibiotic and be done with it.

And so, we took our suction machine and our prescription, and we came home. And do you want to know what surprised me? I felt so at peace with that decision. I just knew that if we said yes, at this point, to ventilation, it would be for me and not for Joel.

And tonight I cuddled Joel, and it was right. I was at peace. It was just so right to cuddle him on the couch, so cosy, so relaxed, and so much love. If Joel has to die, then this is the way I feel is best for him. Our time might be very limited. But it is so very precious.


  1. Oh Karen...once again I am so very sorry. Not that it really matters much...but I agree with EVERYTHING you are doing for Joel. Ken and I had the same rule...so intubating, no chest compressions...no heroic measures to keep him alive. If Graham's body was unable to make his heart beat or his lungs get enough air to breath on his own, then we knew that God was gently tapping on our shoulder and telling us that it was Graham's time to go home...to be with Jesus.

    You just hug and cuddle and kiss and LOVE on your sweet Joel until God gently taps you on the shoulder too. And...HOME in Momma's arms...is the best place to be when God calls your little one HOME...from LOVING arms to LOVING arms.

    All my prayers, and thoughts, and love to you my sweet dear freind...and to your friend Jolene as well.

    All Gods Blessings and Graham blow kisses to you.

    'Angel' Graham's Momma

  2. I'm praying mercy and grace for each day. Lots of love and prayers coming at you from CT.

  3. Cuddle, cuddle, cuddle. Hugs to you my friend.

  4. Praying for you! Wish I was close enough to visit, but know our love and prayers are with you.