Lucky #16?

Most of you know by now that part of John's trach journey is that he has a sleep study once a year.  In the early days, it was more like 2 or 3 times a year, but for the last few years, it has only been annually.  We usually get them done in the summer because when we get home the next day, he is in no shape to go to school.  Although it's called a SLEEP Study, not much sleep is had by either of us.

This year's study was scheduled for July 22.  This happened to be the very next Tuesday after we got home from Austin.  Although I wasn't really mentally prepared for it, I knew it needed to be done.

Two years ago, we went into the sleep study thinking this was going to be it.  This was going to be the time when they tell us his apnea is acceptable and we can start the process of decannulation (removing the trach).  For the 6 months prior to the sleep study, John had been sleeping without his ventilator and without oxygen and had done quite well.  We thought if that was the case, surely he was ready to have the trach out.  After the study, we got the results back and it wasn't exactly what we thought.  We were right in the fact that his apnea was at an acceptable level.  He had gone from having hundreds of apnea events per hour to having less than 20 per hour.  However, a new problem had arisen.  They discovered that because he is sort of a shallow breather at night, he doesn't take deep enough breaths to expel enough Carbon Dioxide when he sleeps.  This may not be significant in the short term, but over time, the increased CO2 can cause damage to major organs.  So not only was he not ready to remove the trach, we had to put him back on the ventilator while sleeping.  We felt like it was a huge setback, but obviously we want to keep his organs healthy.

Last year's study showed pretty much the same thing, so we went into this one not expecting any different.  Our process on Sleep Study days is that John and I meet Tommy for dinner between 5:00 and 5:30 before heading to the hospital.  We go up to the sleep center at 6:30 and they begin the process of getting him all wired for sound.  After we get him set up and in bed, Tommy leaves and goes home and I stay at the hospital for the night.  While we were waiting for the tech to come and get us, Tommy and I were trying to guess which number sleep study this was.  We both were thinking it was #18.  We asked the tech when she brought us back to the room and she said it was #16.  Would this be lucky #16?

Here are a couple of photos of John attached to all of the wires.  We had his hair cut short before hand to make it easier to attach and wash clean after.

We finally got settled in and got the study started.  John did not sleep well that night, even worse than he normally does.  We got up in the morning, detached him from everything and I took him home.  I gave him a good bath to wash all of the goop off of him, fed him breakfast and then he and I took a nap.  I woke up after 2 hours because I had somewhere to be but John slept for 4 hours.  He obviously did not get enough sleep during the night.

A week later, we had an appointment with his Pulmonologist and were looking forward to hearing the results.  She came in with good news and not so good news.

First, the not so good news.  This study showed that his CO2 level was in the acceptable range all night, (yay) but his apnea was worse this time than it had been the last two times.  He had something like 55 events per hour.  While it's still significantly better than it used to be, it was higher than it had been in past studies.  There was some obstructive apnea, which means that there is something in his airway that obstructs the flow of air, but there was a significant amount of central apnea, which means that his brain is just not telling him to breath.  Obstructive apnea can be fixed but central apnea cannot be fixed.  We discussed the possibility of using a CPAP mask to help him breath instead of the trach, but I know my child.  He will not keep that thing on all night and I will be up and down all night putting it back in place.  I told her that for us, that was not an option.

Now onto the better news.  She began to discuss the possibility that the trach itself could be causing the obstructive apnea.  If the trach wasn't there, all of the obstructive apnea might go away.  And she said it's possible that the obstruction of the trach could be causing some of the central.  Either way, we really won't know as long as the trach remains in place.  So we made a plan.  In 6 months we will go back to see her.  Then when it turns to spring and we are out of cold and flu season, we would go ahead and take the trach out and give it some time to see how he does.  After a certain amount of time passes, we will repeat a sleep study and see how it looks.  If he's doing fine, then we will be free of the trach.  If he continues to struggle, we will first try the CPAP mask and see how he does.  If that doesn't work for us, then we may have to reinsert the trach.  Obviously we don't want to have to do that as that will involve surgery, but we all kind of feel like we will never know until we try.  I really feel like he will mostly be fine without the trach but there are two areas of concern.  If he continues to have the apnea, he will not get a good night's sleep and that can affect his developmental progress.  It also can put more pressure on his heart, over time causing it to begin to fail.  And if he continues to not expel CO2, then it can, over time, affect his organs.

The last thing we need to do before we make this decision final is consult with the ENT.  We have an appointment with her on September 10.  We will ask her what her opinion is of having to reinsert the trach should it come to that.  There may be scar tissue built up that would make it hard to do.  Once we get the green light from her, then we will be good to go.

Please pray with us over the next 6 months that God will make his plan for John clear to us.  Pray that John continues to thrive like he is now and that his development continues to improve.  And pray for us as we make these big decisions.  We want to do what's best for John, even if that means he keeps his trach for the rest of his life.  I will keep you all posted as we get more information.