May 16, 2010

Breath ... it's kinda important

Friday night Manny's oxygen (O2) levels went down quite a few times and stayed pretty low.  When it does that, there's this buzzer that goes off.  It's only alarming in my room (not at the nurses' station) so I have to notify them.  

So I did.  The first time, the nurse blew it off since his levels were back to normal.  His O2 kept dipping but quickly recovering.  So we ignored it.  But then it started dipping very low and staying down.  So I got the nurse.  She again blew it off. 

She went into this long speech about how she was trained to look at the child, not the numbers.  That if they're not gasping for breath, not blue, etc.  then it's not a big deal.  I questioned her considering Manny has very weakened muscles.  She said to ignore it. 

So needless to say, all night Friday, it sounded and I got very little sleep.  Just praying.  I was looking forward to seeing the pulmonologist and asking HIS perspective on it. 

On Saturday, our regular hospital doc came in (the one who did some major detective work in finding Manny's genetic test results).  He asked how he did over night and I started describing the low O2 levels - in a matter of fact kind of way.  And he freaked out!  He was very upset and asked who the nurse was, etc.  He said he would write the orders more clearly and make sure everyone knew to make this baby's O2 levels a high priority. 

I asked him the criteria for calling for the nurse and he gave them to me.  He said if they dipped low and immediately recovered several times in a row - he needs oxygen.  Or if it dips low and stays for a few seconds - he needs oxygen. 

He went out and talked to the nurses and respiratory staff.  I know he was upset with them all (even though THEY weren't the ones on during the night) because they all kept coming in checking on him.  (Oh, and the same nurse was going to be assigned to him Saturday night and he got that changed!)  They got all the oxygen supplies in the room.  They fitted him for an oxygen mask.  And they even put the tube on his face so all they would have to do is flip the switch if he needs the oxygen (Which he HATED.) 

He hates it because they suction his nose every 2-4 hours and he hates that.  Then it makes his nose all red and raw.  Then this is stuck in his nose. 

So we were all prepared for the night.  I had a piece of paper and pen ready to record the events so I could accurately describe them and not rely on my blurry mind to recall it accurately. 

Saturday night, he had several episodes where it went low and back up immediately.  The first time was just as the respiratory therapist was coming in to give his breathing treatments and suction him anyway.  It worked.  Then it happened several more times and I thought they were going to put him on oxygen.  But they didn't. 

At 3:43 his numbers went to 84 and stayed for over 30 seconds by the time it came back up. I called for the nurses and respiratory therapist.  The closest nurse came in and started the oxygen and he immediately went to 100.  She stayed until the regular nurse and respiratory therapist came in.  They turned off the oxygen and suctioned him (which wakes him up and makes his levels go up).  And then they decided to leave him off oxygen. 

At this point I was quite conflicted. I don't want him needlessly on oxygen for lots of reasons (One is that we can't leave until he's been oxygen free for 24 hours).  But at the same time, I know exactly what the doc said and he wanted him on oxygen.  So I'll be interested to see what he says today about their choice. 

Finally, he's still sounding "wheezy and crackly" .. which means we're not headed home today. 


  1. Oh Beth -

    Sorry to hear that the one nurse did that. But good to know the Dr. made sure the nurses understood.

    Keeping you and your little guy in my prayers.

    Blessings and hugs - Cathy

  2. Keep standing up for him. You know what he needs. Don't listen to some cynical nurse who just thinks she knows it all. Thump them in the head if they don't listen. ::sigh:: (I'm halfway kidding). Praying for sweet Manny and you.

  3. (((hugs))) you are doing great.