Pumonologist update

"Cheeeeeeese!"

Friday Manny had one of the scariest nights ever.   

Remember how we used to be scared by his gagging/retching episodes?  The doctors thought it was seizures but turns out it's related to his tummy not emptying as well as it should.  We have that pretty much under control.  I adjust the rate, the volume and it usually works.  If not, I suck some of the stomach contents out and voila.  Instant relief.  (Which shows it's likely tied to his nissen fundoplication or to gasteoparesis.)  So these episodes are few and far between, we know what it is and we know what to do. 

So of course, he decided to start something new.  Friday night he had a bit of congestion (pretty typical for him periodically).  Just to be sure he was getting enough oxygen, I put his pulse ox on.  It was fine but his heart rate was almost 200!  He eventually went to sleep like normal and we left his pulse ox on.  He was breathing "weird" (the technical word - LOL).  Hard to describe, just not right.  Normally, we wait about 10 minutes after he falls asleep to put his oxygen on ... but before we could do that, his pulse ox was alarming. 

Instantly, we put the oxygen on ... and no effect.  He was continuing to decline.  It was hitting the low 70's by the time I asked for prayers on my Facebook status update. 

We systematically went to decide if it was a malfunctioning baby or a malfunctioning equipment.  Oxygen working? check.  Probe on right? check.  New probe? same. etc etc. 

We woke him up and it would quickly go to 99.  (Proving the equipment was working correctly.) 

By the end, he had hit 66.  WITH oxygen on.  And I was packing for the ER.

Then all of the sudden, it stopped.  He went to 98 while asleep and stayed there the rest of the night. 

Since then, we've had a probe on him 24/7.  We noticed he dips when he falls asleep, when he wakes up and is fine the rest of the night. 

Today I told the pulmonologist all about it and he instantly ordered a sleep study.  Mostly he is interested in respiration (C02) levels he said.  That's scheduled for August 30.  (He wanted it sooner but the only available day was the first night of school for the kids and I didn't want to leave them.) 

Another goofy thing that happened today was we have a script to get the baby a blood test for SMA (Spinal Muscular Atrophy).  We had the baby fast and went in.  Let's suffice to say ... I have a new story for my classes about poor customer service.  I left LIVID with no test done.  Follow up story to come I'm sure. 

Always an adventure around here.