CPAP

Lots has happened in our CPAP world and I think it might actually be getting better.  I am not certain since I didn't get the report from the DME that I requested today (grrr...) but for me, it's going well.  The boys slept in the same room while we were at the DeCarlo B & B for the drywall repair and I was in the room all the time.  Part of it was the novelty of being together.  The first morning I took of Justin's mask around 5:45 am and told him to lay down and get some more sleep.  When Randy and I were finished getting ready in the bathroom I came out and hear noises from the boys' room.  I went in and they were both in the same twin bed, not sleeping.  I asked Travis what was going on and he said that they were playing, like they did the previous night before going to sleep.  Travis asked, "Didn't you hear the ruckus?"  After that I stayed upstairs until I was certain they were asleep! 

While we had our visitors the boys shared Justin's room and when they left, we moved Justin to Travis' room so they now share the room.  (And baby girl's room is getting ready for her arrival!)  So during all this time Travis has learned how to put on and take off Justin's mask so we have had to set some rules for when that happens.  (No taking it off before 6 am.  Get Mommy if Justin is having problems, etc.)   So really I think it has been going fairly smooth, given the novelty factor still in play.

We also added an allergy medicine and a nasal spray.  We're hoping that those make it easier for Justin to tolerate the CPAP and decrease the apnea episodes.  We started those a couple of days ago and it seems to be helping.


Since I began writing this, I got the report from the DME.  I try to get the reports once a week so I don't get too narrowed in on one night.  During the range of the report, Justin still had a high average of apnea episodes.  That had always been the one area that is our biggest problem.  The report also tracks large mask leaks (when the seal is so compromised that more air is escaping that being blown in his nose), snoring, RERAs (respiratory event related arousals) and hypopnia episodes.  We haven't had many of any of these "events" before, but they seem to be increasing.  Justin flops so much that he ends up face down to the foot of the bed and he twists his head around causing the mask to unseal, but not enough to wake him.  And the hypopnia events per night went from a random one per weekly report to almost as many per night as apnea episodes.  Our struggle with attempting to solve the problem is that one night is very bad, with lots of every type of event, to the next night being very good, with almost no issues.  We don't do anything different, so why is the result so different?


Since I began writing, a few days have passed (okay, a lot) but since we put the boys together I have not had to go into their room hardly at all to help with Justin.  I have been up to help with Travis almost as much (He called the other night to make sure that we were still here.  When I told him that we were he went back into his room and went to sleep.  What???)  The reports are still all over the place, but I am getting better sleep.  The first night of not going into their room was like the first night a baby sleeps through the night.  I woke up with a jolt and shook Randy and asked him if it was really morning and if we really hadn't gone in to help Justin.  Quite a pleasant surprise!


So in the end I figure we know not much more than we knew before.  (Except I am living in a little less of a constant daze.)  We have a sleep study planned for next Monday and I am hoping he does some good flopping/large leak making and has a bad night with lots of events so we can get some helpful answers.  It will take a few weeks to get back to the sleep clinic for results, so it may take time to get those desired answers.