Feb 23, 2016

The End of an Era, or Is it?

For nine, going on 10 years we have had oxygen in our home. I still remember when Ainsley came home from the hospital in December 2006 and they told us they wanted us to bring home oxygen (and a whole ton of other stuff). They gave us a poster for the door so that everyone knew not to smoke in our home, and avoid flames of all kinds.  Of course I'd seen trucks driving down the freeway filled with oxygen tanks and warning signs all over. I was terrified to have this stuff in my home. Could we safely light our gas range? Have a fire? Burn a candle? What if our house caught on fire, would it explode? (The warning was supposed to be there for firefighters too.)

And Ainsley rarely needed it.  They wanted us to have it "in case". If it weren't somewhat dangerous I wouldn't have minded so much. For the first year I carried it with me afraid there would be a moment when we needed it to save her life. That never happened.  Eventually I found a tracheostomy support group on-line and I lurked silently gaining information about this crazy new world we'd been thrust into. Eventually I worked up the courage to post. It seems crazy to me now but my heart pounded as I typed and hit send those first times. The women there (sorry guys, but there were only a few of you) seemed so incredibly knowledgeable and they scared the shit out of me. But I quickly picked up on the fact that I would learn more from them than the countless doctors nurses and specialists we saw. 

One things I learned is that there are serious inequities in the medical system. That while we had oxygen and didn't really need it that there were people with serious needs for oxygen who had trouble getting coverage for it. Christamae was a courageous young woman with muscular dystrophy who was on a ventilator most of the time and confined to a power chair because of her limited ability to move. And she had trouble getting her oxygen. How could this be? And yet it was so easy for us? It was simply an insurance issue and I learned one of the discrepancies in the standard of care that varies across the United States. I learned there were a lot of such things. It made me angry. And in the case of oxygen it made me feel guilty for having something that we didn't really use.

What you might not know is that decisions like this aren't always up to the parent and are kind of automatic.  In the case of oxygen if a doctor writes orders and the medical supplier supplies it then you need to get the doctor to write orders again for its removal before they will take it away. Doctors don't want to get sued, so they can be reluctant. It takes knowledge and advocacy to make it happen. After awhile I felt I knew my daughter well enough that I was able to find the courage to go places without that oxygen tank in the stroller, but I always had it in the trunk of the car. I was always concerned what would happen to my other kids if we were ever rear ended. Thankfully that never happened, but as soon as I felt safe I removed it from our car.


In the early years (pre-fundoplication) Ainsley's airway was literally swollen shut from reflux (and likely other contributing factors).  It was an incredibly dangerous situation. I'm not sure that I've ever shared this photo from one of her scopes but you can see there is no breathing through this airway. If her trach came out (which it could easily do) she would gasp for breath and could actually die.  We watched her like a hawk never taking our eyes off her (driving was quite problematic particularly when she was an infant requiring a rear facing seat). It was stressful to say the least.

Life became less scary once her airway opened up enough that there was some space.  We still didn't know exactly the reason that she needed the trach, but with the support of other parents we learned to take some chances. Eventually experience taught us that we could use a resuscitation bag (which we also always had with us in the car) if the trach came out until an ambulance showed up with oxygen plus we'd seen that she almost never needed oxygen, only if she became sick, and then only when she slept.  After some convincing we were able to get oxygen out of our house for awhile. I'm all for eliminating unnecessary medical costs in every way possible.

Then when Ainsley got her trach removed in July 2014 we were sent home again with oxygen. She was actually more likely to need it then than when she was trached but again we needed the experience of seeing that she was safe.  Her trach stoma was surgically closed in July 2015 and again we were concerned about how she would handle the change to her airway, so it was logical to have oxygen "just in case". It's been 6 months and after making it through most of cold and flu season this year I was feeling pretty sure she wasn't going to need it so I started the process to get it removed from the home. It took a few months of following up repeatedly (that's just how things are) and they picked it up last Friday.

Of course that is also when I started to feel sick and so I've been avoiding Ainsley so she isn't exposed, a little terrified that just as they pick up the oxygen she'll get sick and need it, because wouldn't that just be like "life" for things to go that way?!  I've been in bed for days and Steve has stepped up to take care of things around the house and I'm starting to get better and I think she's not going to catch it, but it just reminds me that this will never be over. We have good reason to be worried about Ainsley's airway. She still struggles when she cries or laughs. Playing too hard gets her out of breath. It is awful that having fun and playing or even just walking leads to concern about getting enough oxygen.  And of course there is the fact that she can't sleep without the breathing support of CPAP (actually APAP in her case) and I worry that unless we keep her on pulse-oximeter monitoring at night that she could die while she is sleeping if she fails to wake up if she's having trouble breathing. It's happened, our pulmonologist has warned us he has low tone patients die in their sleep every year.

I wonder when did having a flammable explosive gas in my home become "no big deal"? When did I change into the person who feels confident they know more about their daughters medical condition than her doctors, and therefore knows better whether or not she needs oxygen than they do? Although we are happy that Ainsley got her trach out and is managing okay without it there has been a part of me that understood that this will never be over. I've held onto her trach and g-tube supplies for that reason, I know that there is a chance that either one could need to be put back in. All it would take is one bad illness. Still I push forward. I am choosing to optimistically removing oxygen from our home and soon I will be packing up her old medical supplies and equipment. I have enough to supply a small 3rd world medical clinic. It will be nice to make space in our home but it will also be symbolic of the hope but not certainty that we have, 6 months post stoma-closure surgery, that this decannulation is permanent. 

I want to conclude for my friends who have kids with trachs who dream of a day when they too can "leave it all behind" and for friends and family who view our lives up close or from a distance that while getting the trach out is great, for most airway patients it does not mean that our life is now magically like everyone else's. And I will never forget what trach life is like. It will forever be part of us. As parents of newly trached children we all believe for awhile, that the trach is the enemy, and life will be "normal" when it's out. I wish I'd understood from the beginning that it's not that simple. I'm still learning it: nights that I listen to Ainsley breathe heavily, nights that Steve or I jump up out of bed to check on an alarm or reposition her mask, when she starts to get sick and I fear how badly it will affect her breathing, times that she gets hurt and cries and struggles to breathe, something that happens often. These are things that still affect us every day and probably always will. Only time will really tell. Still, I'm thrilled as can be to get that oxygen out of my house!

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