Fun Times (with CPAP). NOT!

I've been feeling very conflicted about our plan to try CPAP (Continuous Positive Airway Pressure) again for Ainsley's Obstructive Sleep Apnea.  This is only partially because I'm indecisive. In this case I knew exactly what I was getting in for and I knew it wasn't going to be fun.

For either of us.

 

Back in 2010 I worked really hard to get Ainsley used to CPAP with the intention of getting the trach out and using CPAP while she sleeps. But a sleep study showed her OSA was severe and the thought of being 100% dependant on a machine to be able to sleep seemed like it would be too hard on Ainsley and a risky idea.

 

FF to 2012 and after our visit to Dr. Cotton in Cincinnati I was left with little hope of Ainsley ever getting the trach out.  Then our local ENT had the idea to inject the muscles that close Ainsley's vocal cords to keep one of them from fully closing. This would leave her airway somewhat more open. How much we wouldn't know until we tried it. It could be great but it could also lead to complications like aspiration but unlike surgery the results aren't permanent. If it badly affected her lungs we could stop.

 

We decided to wait until the spring when cold and flu season is over and the injections were done on 4/30. Afterward we observed that she was less likely to remove the cap from her trach during the day during periods of distress like when she cries (which has always been a problem for her). The next question was whether or not it helps the OSA so we let her fall asleep with her cap on to see what would happen. Normally she does okay for 30-45 minutes until she falls into a deeper sleep and then she will startle awake. After the Botox she could go longer and without waking. Yet her breathing was loud.  We tried different positions.

 

A friend from the trach forum suggested no pillow. And that worked better.

She was still noisy but she satted at 97% and stayed asleep until 5:30 am when she woke up crying and pointing at her head. Maybe a headache? Maybe a neckache? Even though it was better it really wasn't good enough. Unless her breathing got better post-decann without the cannula in her airway it just wouldn't be enough.

 

Which really leaves us back at square one.....needing CPAP.

 

 Ainsley always does better when I give her advance warning of what to expect. The night before I told her we would be using CPAP the following night. I had her try the different masks (nasal and full face) and choose the one she wanted (full face). This photo is the next night. She was calm when I put it on and was fine for an hour but then cried a sad a pitiful cry.

Yes that is a tear.

This is hard. 

Remember I said that? 

 

Here is the setup.

 

And a close up of the full face mask. It straps around the head.

 

I climbed into her bed with her and she made it another hour or so until she really started crying. I got mad at her (I was asleep.). Which makes me feel terrible. This is why in 2010 I decided it just wasn't worth it. So I told her we would stop and try again the next night. I think she was grateful. She understood and said yes she would try again tomorrow. Bless this sweet girl. 

 

All day Thursday I was feeling like chucking the whole plan, cancelling the sleep study and putting this non-sense behind us. It takes a LOT of energy. But it's also hard to give up when you've put so much effort into getting to this point.

 

Thursday night I explained it to her all over again. "When you don't use your trach its hard for you to breathe when you sleep. The mask helps you breathe. If you can wear the mask then you might be able to get your trach out."

 

Then I gave her the choice of putting it on when I tucked her in, or waiting until she had trouble breathing. She "said" (don't ask how we can communication stuff like this when she is non-verbal but we do) she wanted to wait. Steve and I went to watch a show and listened through the monitor until she obstructed. Then I put the mask on and stayed a couple minutes until she fell asleep. She did okay for awhile and then cried. I had to be firm and it was rough. I stayed with her until she was calm and then left her again.

 

Here she is at 5:00am still sleeping with the trach capped and CPAP on!!!

I took a video with my phone but the audio was too quiet to hear. Bummer.

She was rousing so I just took the mask off at this point. Success! We made it through a night using CPAP!

 

It wasn't fun but we did it.

One of the hard things about "this life" is that often there are few answers for these medically complex kids only options. And sometimes you just don't like the choices. So the simple choice is trach or CPAP? There are lots of pros and cons both ways (I'll spare you all that detail) so really there is no "right" answer to the question.

This morning I asked Ainsley was she would like to get rid of the trach and sleep with CPAP on every night, or to keep the trach forever. Sometimes she says what she thinks you want to hear. Other times she answers yes to everything. So I posed the question multiple times and different ways to try to get a "true" answer. She really surprised me by choosing the CPAP over the trach. Wow, really?!!

Our sleep study is scheduled for 6/16 (Father's Day. It sucks I know but it was the only option.) so we will continue to use the CPAP when we can over the next week so that she is able to wear it at the sleep study. This will help the doctors can get an idea of how well the CPAP fixes the OSA and whether or not she would be able to get her trach out. It will be a long process and it might not work out.  But even the thought of the possibility makes my stomach churn.

I wish this was easier. The answers clearer.  The truth is either way it's not. Recently I've been spending some time on the Cerebellar Hypoplasia Facebook site. While some of the kids have breathing difficulties none of them have trachs. The trach provides safety for Ainsley but it comes at a cost. If she gets the trach out we will be trading one problem for another. I've lived and breathed tracheostomies for 6 years. I'm comfortable with it. Steve is comfortable with it. We are less comfortable with the thought of having a child with no trach and a difficult airway. That is the reality.

Over the years I've spent a lot of time listening to the experiences of other trach parents and what I hear over and over again is that after getting the trach out their child is happier, healthier, more energetic and they eat and speak better.  Those are things I want for Ainsley. But I want her to be safe too.