Waiting for clearance to land.

Yup, I think we are in a holding pattern.



Joel is doing ok. He is mostly peaceful, with short and infrequent periods of being upset or unhappy. By short I mean usually only a few seconds to a few minutes. It's not great. But it is bearable.



We did take him in to emerg on Sunday night. We did have his blood checked and they did do a urine sample and both came back clear. There still could be an undetected viral infection brewing, his blood work was not as clear on that. Still, considering his lack of fever or other symptoms, and considering that he has been sick many times without this level of pain and upset, I'm pretty sure, as I always was, that he is not sick with a germ of any kind.



They also did a couple X-rays, but only of his spine. Each time he's had a buckle fracture in a limb, it became apparent within a couple of days that there was a particular limb associated with the pain, and we just haven't seen that. So we only checked his spine, which also has not changed since the last compression fracture. I'm glad we checked it, as now I don't feel quite so bad or worried about moving him.

But we, of course, didn't get any answers. They offered to admit Joel to run as many tests as we wanted. But when I asked if the doctor if he had anything in particular to look for, any ideas for an answer to the pain, he said no. He is a very nice doctor who has seen Joel numerous times, and I trust him enough that we decided there would be no point to a bunch of other tests.

It would be different if we hadn't already done this once, back when Joel was a year old. That time he was admitted and that time they did do a bunch of tests, but didn't find anything. I really couldn't see any point to a repetition of that.

So, we are up to a very high dose of morphine. Ok, I should say, what is comparably a high dose of morphine. The last two years we have never needed more than 2mg, or maybe 3mg occasionally for really bad pain. And we really haven't need it that much. Last spring we were almost completely "off" of it. But now we are, for the first time, using between 5 and 7mgs of morphine, and the Palliative Care doctor has given us permission to go higher if Joel is still unhappy.

I'm not too worried about the sedative effects. Joel is still completely wake-able. He is sleeping a lot, but then, pain tires him out quite a bit, and he tends to really sleep away the bad times, if he can. As long as I can still easily wake him (read, disturb him from his peaceful drowsing to an unhappy face with in 2 seconds), I know it's not too much morphine.

But it doesn't feel very good to know that his pain level is up that much higher, and whereas previously in times of pain, the 2mgs sometimes even got him smiling and playful, I haven't seen a smile in what feels like a long, long time.

We also started Risperadone. It's a drug that sometimes works in these sort of situations where there is a degenerative brain condition. I'm not too hopeful about it, though. I really haven't seen much difference in the two days we've been on it. I think most of the pain management is coming from the morphine. But we still have a couple of days left for the full effects to kick in, so I'm trying to keep an open mind about it.

I'm happy about the fact that Joel is here, in a comfortable and loving home, instead of in the hospital. I'm bummed out that he is feeling so yucky and that he doesn't even feel good enough at any point of the day to smile. This part of Joel's illness is so very, very hard. It is this part of the whole thing that I dread most, and that I find the most testing of my faith in Christ. These periods are the darkest. They are the times when I have the blackest thoughts. I'm not sure how to explain this. Depression? It just seems like the world is filled with so much darkness and pain. The glass seems half empty. It's like a very grey, wet day just before spring. The wind is sharp, everything is black and white, and all the light seems to filter slowly through this dark grey of cloud.

And I am very sad about it all.

So here we are waiting, circling the skies. I'm hoping that we can ride this pain through to the other side where there are more smiles and happiness for Joel. I'm hoping that as I carefully keep adjusting the morphine, I'll be able to extinguish more of the pain so that instead of just calmness, I see some sign of real relief.

It's hard to explain that. Joel isn't screaming or crying. He is calm and peaceful, and he is mostly sleeping. Yet I can still see that he is holding a ball of pain in him somewhere. It's barely distressing him. But I am waiting to see his hold loosen and the ball of pain slip out of his grasp and roll away. This is what I have not yet seen, that ease and relaxation when the pain completely rolls away.

Hard to wait for this to pass. I'm still keeping in close touch with P/C, I'll be emailing the doctor today. We will keep looking into ways to make Joel more comfortable than he currently is. There are other options to try. And sometimes it seems time is the thing in Joel's case. He's had so many bouts of pain (this being the worst) and whatever has caused it has passed, be it a day, a week, or a month.

So thank you for your prayers. And for the notes and encouragement. We appreciate them. You know I am honest here, so I'm not hiding anything. I'm saying that because I don't want anyone to worry that it's WORSE then it is. We are ok. I'm just sharing my feelings and impressions freely. And God has not abandoned us. He has not abandoned me. Even through this, I never feel abandoned by Him. One day He's going to make this all better. It's the waiting that is hard.