Results

Tommy spoke with John's sleep doctor on Monday, and the results are in from his sleep study.  There really isn't much to report.  His study was basically the same.  He had a little more than 5 apnea episodes per hour.  His lowest oxygen saturation was 80% (at home we keep it above 90%).   He hasn't gotten better, but he hasn't gotten worse.  So the question was where do we go from here.  For that, we were told to consult with his pulmonologist.

So yesterday, Tommy spoke with the pulmonology nurse.  According to the doctor, since his study hasn't really changed, she thought we should go ahead and try letting his sleep without a ventilator.  Instead of using the machine, we would just give him oxygen support throughout the night.  That way, if he does have apnea and his oxygen saturations fall, the oxygen will help him recover quickly when he does begin to breath again.

There are some positives for not using the ventilator.  First, the room would be quieter.  Also he wouldn't have so many tubes in his bed and it would be easier for him to flip from side to side.  We wouldn't have to worry so much about him getting tangled up.  It would be easier to put him to bed, which means that maybe we can actually go out before bed time and let someone else put him to bed.  This could mean that Tommy and I might actually be able to go away for a few days and leave him home with grandparents.  We have never done that.  It also makes travel easier.  We only have to worry about taking oxygen with us instead of having to pack up a ventilator and all of the parts that go with it.

There are also a few negatives that could come from not using the ventilator.  The main negative could be the quality of sleep he gets.  When a person stops breathing while they are sleeping, the natural reaction is for the brain to wake the body up so they can start to breath again.  If he is having a lot of apnea and he is waking up several times a night, he may not get the good quality of sleep that his body needs.  This can affect development and learning as well as his mood and behavior.  So this would be something we would have to keep a close eye on.  The other big thing that we worry about not using the ventilator is that the insurance company might decide that we no longer need nursing support at night.  I don't really think this will happen as long as he still has a trach.  In fact, several years ago, he didn't sleep with a ventilator at all.  We kept the nurse during that stretch.  So I think we will be ok, but it is something to think about.

But the biggest impact of stopping the ventilator is long term.  The doctor didn't say this in so many words, but Tommy and I both feel that if he does well without the ventilator, this could lead to him getting his trach out.  The reason he still has the trach is so he can be ventilated while he sleeps.  If he continues to get good sleep and thrive without benefit of the ventilator at night, then it is a very real possibility that he will no longer need the trach.  That is what we have been hoping and praying about for so long.  This possibility is still a while away.  If and when the time comes to take the trach out, it has to be in either the spring or summer.  Doctors do not remove trachs during the fall and winter, when cold and flu season is in full force.  So even if this works well, we are looking at a minimum of next spring.

So the plan for now is to let him finish school.  We will continue using the ventilator through the end of the school year, and then we'll start a trial run of no ventilator and see how it goes.  Please pray for us and for John as we make this adjustment.  For the first time in quite a while, we have gotten our hopes up for removing the trach.  Hopefully this time will be the charm.