Blindsided… A Bit

^{Cough-assist Machine}

A few weeks ago, we had the second annual respiratory appointment since our son was diagnosed with Duchenne muscular dystrophy (DMD). Due to the severity of this condition, the appointments are annual at the moment, but could eventually become bi-annual if his neurologist thinks that’s necessary.

Now that we’re in the second round of these appointments, we’re no longer generating benchmarks, but we are now starting to see how this condition effects the various body systems as his muscles weaken over time. It’s now, that the reality of what he’s facing, is really starting to hit home. I took all of those initial appointments, last year, in my stride, but now that I’m seeing evidence of the regression of his muscles, it’s making the severity of this condition all the more real.

(As an aside, this week, he also completed a physical test that his physio conducts. This particular test is completed every 12 months, and while it had been 13 or 14 since he last did it, I was surprised to be told that his movement had dropped significantly since the previous test. We know that a full-time wheelchair is inevitable, but no amount of forewarning can really prepare you for the evidence that shows how inevitable it actually is.)

As a result of this respiratory appointment, we were referred to the respiratory physiotherapist team because it was discovered that his ability to cough and clear his lungs of mucous and other ‘stuff’ is significantly compromised. (This is one of the many issues associated with DMD that you never even contemplate until it gets presented to you.) This places him at greater risk of heightened respiratory illness, and as we’re heading into flu season in Australia, they wanted to get a jump start on preventatives as soon as possible.

Kind of Blindsided… But Not Really, Maybe

So it was, we headed into the hospital, for about the 20th appointment in the past three weeks, to see what the respiratory physiotherapists had in store for us. (I kid you not - we’ve had so many appointments recently. We’ve even literally forgotten to attend one we’ve had so many. We ended up rebooking that one two or three times.)

The appointment was to be held in a new unit, one that I’d never been to before. If it wasn’t for the reasons we were finding all of these hidden units, I’d actually find it quite fascinating how many little quaint places there are squirrelled away in the hospital, but on the other hand, I’d be happy to never know they exist too!

Because this was our first appointment, we met the whole team who would be working with Dominic - well, it was really only two, and a student who was on placement. But it felt like a lot of people, especially for Dominic who quickly put up his walls and opted to not talk for the first half of the appointment. They were lovely, as most people in this hospital are, and they worked exceptionally hard to put Dominic at ease and make him comfortable. As they asked questions, and gathered background information, it became apparent, the purpose behind this appointment.

The way these specialist appointments usually run, is that two appointments will be booked - the first is the one where tested are conducted. In the case of respiratory, he does a heap of breathing tests into these machines that monitor how he is going. The second, and usually last appointment, is the one with the specialist where we have a basic consult and discuss the data collected at the first appointment. Until now, this has been the way they’ve progressed, but I guess, as the condition progresses, we’ll find more of these extra follow-up appointments occurring. And so, we were presented with the respiratory physiotherapists.

My wife attended the second appointment, this time, and she did mention to me that they were concerned about his ability to cough, and that they’d organise a follow up with the physio’s, but we didn’t expect that it would be so quick (about 2 weeks between the second appointment and this one). We were also aware that as a part of this new appointment, we would discuss the possibility of Dominic eventually needing a cough assist machine. A device that would help strengthen the muscles in his chest that are responsible for helping him to cough.

Therefore, you can probably understand my surprise when I entered this appointment with him and, after the initial pleasantries and information gathering was over, the real reason for the expedited appointment became apparent. Early on, I was shown a bag in which was one of the aforementioned cough assist machines and was told that the purpose of the appointment was to see how Dominic would go using it, and that we could consider taking one home in the next few weeks. However, as the appointment progressed, I could hear the language being used changing. It was subtle, but I could hear it. Statements like ‘if you want’ changed to ‘when’, ‘sometime in the future’ changed to ‘today’. We were about half way through the appointment when I realised that this wasn’t ever about providing the machine to us in the future, but it was about us taking one home on that day, and the appointment was to teach us how to use it and for the physio’s to set the machine up for Dominic to use. Clever! They got us hook, line and sinker! I’d been blindsided and their intention was clear - we weren’t leaving without the machine.

What Does All This Mean?

That’s a good question! What does all of this mean? My biggest concern is how quickly they’ve implemented this, and that my reading of the physio appointment is that we didn’t really have a choice as to whether we would be leaving without the machine. Of course, we always have the option of saying no, but the alternate to using this machine means that Dominic’s chest muscles will continue to get weaker at a quicker pace (the machine won’t stop his chest muscles from weakening, but it might slow the deterioration down somewhat) and this will increase the likelihood of chest infections and other problematic chest conditions such as pneumonia. It also means that for milder conditions such as a cold, he is at increased risk of needing hospitalisation. We obviously want to avoid these things, so what choice do we really have? Like with everything that this condition brings, we have a choice between two really crappy options.

This machine isn’t something that he uses for a few months and then stops, it’s built into his life now. We’re borrowing the hospital’s so that the physio’s can build up enough evidence of his use of it, and then they’ll request funding so that we can have a permanent one at home. Watching your child have to go through this is a load of crap, but in the interest of remaining positive, I’m grateful that we live in a time, and a country, where this sort of medical advancement is available to us.

So, we’ll use the machine and hope that it keeps his chest muscles as strong as possible for as long as possible, allowing him to cough with enough force to expel the impurities needing to be expelled so that he can stay out of hospital as much as possible.

We’re still relatively new to this journey, and I know that the more this condition advances, the more equipment is required to sustain quality of life. But it doesn’t change the fact that every time we get a new piece of equipment, it feels as if we’re taking steps backwards. Even though we are aware of the eventuality of his needing these extra pieces of equipment, it’s still really difficult when it does finally happen.

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