Back to the Sleep Clinic

It was finally time for our return trip to the sleep clinic.  Randy was able to go with us since it was his Friday off.  I cannot tell you how excited he was to be able to get up early and drive down to the medical center in morning traffic to within a block of his office.  What a treat on your day off!  Travis was excited to have Randy with us because he has been playing some games on the ipad and he needed Randy to help him get to the next level.  I always talk to the doctor and don't help him!

The appointment did not start out well because the doctor was flustered.  It was not supposed to be a sleep clinic day and her schedulers had put us in on this day in error.  And the DME had not sent the reports they were supposed to send about Justin's CPAP usage.  (Grrr!)  And since they put a modem on our CPAP, somehow the first nurse we saw assumed that meant there was no data card to read.  It took probably 45 minutes for everyone to settle down, get the report, figure out that we have a data card and get it read.  Whew!  Then the real discussion began.  The doctor started listening, Justin demonstrated the masks, and we shared our dramatic descriptions of wind storms and whistling noises coming from the various assortment of masks.

The doctor finally concurred with our analysis.  Based on the report, Justin is having just as many OSA episodes per hour before the CPAP as with the CPAP now.  So something needs to be adjusted.  She agrees that the masks we have are not working and she is willing to try some other options.  She agreed to send us back up to the sleep lab for another mask fitting and we are going to schedule another sleep study just in case we cannot correct the problem before then.  (They are scheduling studies now for August!)  The sleep lab could not see us in the morning, so we scheduled for after lunch.  That was actually okay because we had planned a little side trip to the zoo since we were close.

It has been a while since we have been to the zoo.  A lot has changed, but we didn't have a lot of time to see it all since we had to get back to the sleep lab.  Some things never change though:  Somehow, the play area is always the hardest place to leave, and Travis still doesn't like touching animals. 

Then it was back to the hospital and back to work.

We had to tell our whole story again and the nurse who works at the sleep lab was so good to us.  She brought out a bunch of different masks and she sang to Justin while she tried to fit one of them on him.  This was getting to be a challenge because it was pushing his nap time.  He let her put it on without any big trauma and it was so quiet and it fit so well!  The only big drawback (there's always something) was that the head gear that goes with it is huge.  It was pulled as snugly as it could be and it still was too large.  It needs to be cut down and resewn to make it fit properly, but I think it has potential.

The "nugget" for this trip to the doctor was all about this nurse.  She is like a sleep guru.  She came from another hospital where she set up all sorts of protocol and programs to help improve CPAP usage.  Now she's on the same mission at our hospital.  The hardest transition is that now she is working with kids.  So instead of just being able to ask the person what is the problem, it's all about statistics.  The top three reasons people don't use the CPAP machines are:  1. poor fitting masks  2.  nose issues  3.  Lack of education/understanding why the mask is necessary.

So we are starting with number one:  the mask.  We are going to try to make the mask fit as well as possible and then when we restudy we can use this mask and get hard data to see if this works.  She also recommended going ahead and working on number two:  the nose.  Justin may be having a tough time adjusting to the air blowing in his nose and it may be irritating him even though we cannot see it.  There are preventative nasal sprays that coat the inside of the nose which would make the air more tolerable.  This was the first time I have heard of this so this was big news.  And number three we already understand so we're good with that.  She recommended trying to make Justin understand that it is good to use the mask and that it makes mommy and daddy happy when he uses it.  Randy and I listened and nodded, but then both agreed we are at a loss for making Justin do anything he doesn't want to do (case in point, potty training).  If it's something we can strong-arm him into doing, we're okay, but if any of it requires his initiative, we're stumped.

I went home and made bar covers for his crib so when the hose moves through it it doesn't rub and make a loud noise.  I also plan to make a cover for the hose to insulate it to make sure the warm air going through it stays warm (and thus irritates his nose less) and also to make it rub less on the crib.  My mom is coming this week and I am waiting to cut apart the mask head gear until she gets here.  She does much better at that type of stuff than I do.  Although I did impress myself making the bar covers for the crib.  They ended up being nice and snug and perfect-fitting.  Randy said even he was shocked since they looked too big at first.  Measure twice, cut once!  Okay, so I did make one a little too small, but the width of the velcro covers my error.  (I was hurrying, I admit it...)

So far, Justin is not impressed with the small changes.  He was still up 8 times that night after the doctor.  (And not to be outdone, Travis woke once.)   He did fall out of bed once, so I will let that one slide.  But mostly it's just for me to come in and lay him back down and tell him to go back to sleep.  But I hope we can get this new mask to work and start making some big improvements.

P.S. Randy was able to get Travis to the next level of his game, so it was a successful trip all around!