Update on Joel

Joel has really been giving my nervous system a good work out. It's just been a tough couple of weeks. I might need heart medication.

Yesterday he had an amazing pain-free day. He mostly slept, but he was really relaxed this time. I could clearly see that the subtle fist of pain inside had unclenched, and he was truly comfortable.

I sang to him for about an hour. He dozed on my lap. Whenever I switched songs, he'd peep out from under his eyelids, just to show he was listening and appreciative, and then go right back to relaxing. Something as simple as that was like water on parched ground.

Too bad it didn't last longer. Joel's breathing got really "crackly." His upper airway does this from time to time. Just full of rattles. It sounds awful, and it gives you an almost irresistible urge to keep clearing your throat, but we are used to it. If you are not aware, then I will tell you that as long as the sounds are from the UPPER airway, you are still in a no need to panic" sort of mode. "This time it didn't really clear though. It was the worst I've heard it, and his O2 needs increase dramatically. This worried me. I wondered if his breathing was taking another downturn.

It was a bit of a rough night, though from about 1:30 on it was fairly peaceful. We did face mask O2 at a higher rate than usual, but the alarms did not sound.

Then this morning he had a fever and looked awful. I don't know where my blood pressure was by that time. His O2 needs went up again. I wondered if he had pneumonia. I wondered if he'd aspirated some of the rattles and crackles from the night before.

After giving him his morning steroid and treating the fever, he began to look quite a bit better. In fact, I began to believe that he might actually get better, and not choose this week end to die.

The P/C doctor came by. He listened to Joel's chest, and just observed him. He was very helpful in discussing our options and plans. He felt, from how Joel looked, that he was indeed fine, and would be getting better this weekend, and not dying, like I had feared.

And after really discussing our options, I felt better about some of the decisions we were making. It's always a struggle, deciding to treat or not to treat, to go in to hospital or not to go in to hospital. Right now Joel is on antibiotics, so if he did develop pneumonia it would either be viral or a really potent bacteria. We can do antibiotics here at home. Even with IV antibiotics, the only advantage is how quickly they start working. The only thing, really, that they can do differently for us at the hospital is put him on a ventilator if it comes to that.

Right now, as long as Joel is already on antibiotics, we will not bring him in. I can't really see it being a better option. We really don't think at this time we'd be willing to put him on a ventilator, particularly as we'd be dealing with either a virus, or a resistant strain of bacteria.

We are going to reserve our right to change our mind, as our circumstances change. If we were not already on antibiotics, we would have brought him in for more blood work, IV antibiotics if needed, and we might consider a ventilator if needed until the antibiotics had good opportunity to "kick in."

So many of our decisions are temporary. We never know what each day will bring, or what changes will come for us or Joel. It is stressful. Understatement. Some days I just want someone to come over and tell me what to wear, what to cook for dinner, and if I should fold the laundry or wash the floor, because I'm so tired of decisions. No, I'm just joking, please don't really tell me what to wear, that would just be annoying. ;)

For now, though, I mostly feel relief. It seems today is not THAT DAY. THAT DAY. Instead, it seems today is a day to hold my baby, and maybe sing some songs. I'm really quite happy with that. But if things do start to go wrong again, I feel at peace, knowing that for at least the weekend, I know what the right thing to do is.