Progress...Maybe?

It has been 9 nights since we took John off of the ventilator, and honestly, I'm not sure how it's going.  The first 3 nights were great.  He slept with no ventilator and no oxygen and did quite well.  But when Friday night came around, all of a sudden, he needed oxygen right away.  So he slept with oxygen that night until about 3am, when the nurse was finally able to turn it off.  Saturday night was much the same, except the oxygen was turned off at 4am.  So at this point I'm thinking, 3 steps forward and 2 steps back.

Sunday night came and we were able to get him to sleep without the oxygen.  So I thought we were making progress.  But in the morning, the nurse told me he turned the oxygen on from 1am to 4am.  DRATS!  I still can't figure out for the life of me why he didn't need the oxygen the first 3 nights but now he does.  I'm just thinking maybe he's more tired and not taking deep enough breaths.

Monday and Tuesday were much the same.  He needed oxygen part of the night, but not all of the night.  By now it's really starting to bug me.  I guess all of these years with John has not given me much patience.  I want to see progress but I'm not doing so well to wait for it.

So last night, we put him to bed and it was the same thing.  His oxygen levels were below 92 and wouldn't come up without oxygen.  And even with the oxygen, they were only around 93 or 94.  None of it made any sense to me.  He should have higher oxygen sats with oxygen.  So I sat down in the chair in his room and began to tear up.  I'm just about at my breaking point and about ready to put him back on the ventilator.  I want my baby to sleep well and I want to make sure he's able to breathe well.  So my genius of a husband suggests that we take the probe off of his toe and put it on his thumb just to get a different reading.  We have been struggling with the pulse ox probe on his toe.  It's very tricky to get it in just the right spot to get a good reading.  But his thumb is smaller so it shouldn't be hard to get it on there right.  So we get it on his thumb, and low and behold his oxygen saturation is 98%.  AMAZING!  Of course that was with oxygen, but at least we knew then that it was the probe not reading right on his toe instead of him not getting enough oxygen.  The problem, of course, is we can't leave it on his thumb because he likes to put his hands behind his head.  That would cause a problem with the signal picking up.  So again, my brilliant husband suggested that we put it on his second toe instead of his big toe.  It's smaller and we shouldn't have a problem getting it on.  So that is what we ended up doing.  And VOILA!  No oxygen was needed all night long.  He still has his moments of apnea and his oxygen levels do drop down when he has those, but according to our nurse, they never went below 90% and they always came right back up.

So maybe the progress wasn't necessarily John's this time.  He has probably been doing just fine all along and we didn't know.  Maybe the progress was mine.  I am the one who needs to learn a little patience.  I just need that voice inside my head (or the voice of my husband) keeping me calm and reminding me to see the big picture and give it some time.