Spoke to soon

Well, I spoke too soon.  He can't stop the steroids after all...we're back to 10mg per day because his lungs "rebounded" as they say.  Apparently, if you taper them too fast or if there's even a tiny bit of inflammation left anywhere when you stop the steroids, the inflammation comes back real bad, real quick.  So, he took that last dose on Sunday.  None on Monday or Tuesday.  By Wednesday, we saw some trouble.  Actually, it was Tuesday night that I started to worry.  As he was trying to get to sleep, I put him on the pulse/oximeter to watch him through the night.  His oxygen was dipping pretty low.  He normally sats around 94 when he's still awake without oxygen on and that is really good.  As he falls asleep and his breathing slows, he would dip to the high 80's like between 88 - 91 while sleeping...which is why he wears oxygen all night.  Well, he was dipping like that while he was still awake and even got down to 87.  He put on his oxygen and went to sleep.
By morning, things got a little worse and he was dipping like that with the oxygen still on and running.  When he woke up he was so tired and had a headache but we had a clinic appointment at 12 so he had to get up and get in the shower.  By the time he got out of the shower (didn't wear oxygen in the shower, never needed to), his lips were blue.  I took one look at him and said, Jacob you look blue, let's check your levels, and I put him back on the oximeter.  He was 67 and dropping fast!  He plopped down on the bed and said he just had to lay down, "I'm so tired mom" he said. I checked his toenails and they were grey, his fingernails were white and no blood return when I pressed on them.   He got down to about 64 and then started to climb again but couldn't even get up to 80 without the oxygen on.  I was freaking out by now.  We turned the tank up as high as it can go and watched his O2 levels climb quick and soon he was back up above 90.
I packed an oxygen tank in the car and packed my bags for the hospital.  I was sure he was going to be admitted yesterday and we'd be spending the night in ICS again.
Well, we got to the clinic safely and did some testing on the way there with him sitting up in the car and breathing deeply.  He was able to keep his levels above 90 on his own if he took deep breaths and let it out slowly like a whistle.  When we got to the clinic, they checked him and he went from 87 - 94 then 93, 92, 91, 90 right before she took the oximeter off his finger.
So we told the Docs about our "episode" that morning and they decided that he would have to go back on the steroids for another month or so and then we'll try to taper from 10 down to 0 more slowly.  Apparently they make .5 and .1 mg prednisone tablets so we'll be doing some of those on the way back down ...and praying that we get every last bit of inflammation fixed before we have another "episode".
Well, the good thing is that 10mg is not that much and it's not dangerously high levels. Hopefully he will still be able to lose some of the swelling and start looking more like himself over time, it's just going to take a little longer now.