On the first day, he coughed and slept a lot. Yesterday, he started crashing. By bedtime, his oxygen levels had dropped to 81%. Truthfully, I have never seen his oxygen levels go that low before, never. It was so bad, he was on the cusp of realizing he is dying.
He is still coughing, but he cannot move anything out. He is coughing until he turns red in the face and nearly passes out, but nothing moves. That tells me that the mucous from his cold has fed the bacteria in his lungs and it has now set up like concrete inside his lungs. There's only a couple of ways to get that out. We use breathing treatments to help him move the mucous out. It's long and complicated, and only a Cystic family would recognize most of what I would be describing. Suffice it to say that when healthy M does two sessions a day of both lung clearance and inhaled medications that lasts nearly an hour to help him clear his lungs. When he gets this sick, we have to do parts of that treatment four times per day to try and help him move more out. We started that yesterday evening. The other thing we can do is given antibiotics to break up the growing bacteria again.
We will never get all of the bacteria out of M's lungs. Most of us get any invasive bacteria in our lungs and it's called pnuemonia. Most cystics live with colonies of invasive bacteria in their lungs. Therefore, when they grow more than usual, it's called a lung exacerbation. M grows Psuedamonas in his lungs. It's a horrifying bacteria to be infected with, no matter where it invades. It's one of the two most horrifying for a Cystic to have. Ten-ish years ago, an inhaled antibiotic came onto the market that allowed Cystics who colonize this bacteria to live longer than the four year life expectancy they used to have once it showed up. Many cystics, like M, developed an immunity to this antibiotic. Last summer, a new inhaled antibiotic finally came on the market. Until last month, M was using it every other month to try and control his bacteria.
M is extremely resistent to his inhaled antibiotics, far more than his other breathing treatments. We weren't even successfully getting a 50% compliance rate on the antibiotics anymore. Meanwhile, this antibiotic is in extremely, EXTREMELY short supply. They stopped filling new prescriptions of this by first of this year. Six months after it was released, the Cystics desperate for hope to stay alive flooded the maker far beyond their capability to produce this drug. We became acutely aware of the fact that while M is running out of time faster than we can stop his clock, every dose of that druge he dumped and wasted was another life that could successfully stop their clock and were desperately seeking the meds to do so.
We made the decision to stop M's inhaled antibiotics. The inhaled antibiotics are the ONLY thing that will halt the progression fo his Psuedamonas ultimately. That leaves us only IV antibiotics to control his bacteria, and those have limited effectiveness. He was supposed to start them first of July anyway. He's advanced so far in his CF disease that the only option we have is to give him IV antibiotics every three months to support his lungs.
Except, this cold has hit M like a ton of bricks and he cannot fight it. Last night, he couldn't breath. Turns out, when his oxygen drops below 85%, he doesn't fight and rage. He simply struggles to stay awake at that point. II and I spent most of the night debating how hard do we fight this time. Do we fight to clear his lungs, or merely keep him comfortable? Do we get really aggressive and start his IVs a week early? What is the right answer to this? The only thing I know for sure is that if we make it out of this crisis, it won't be the last time we have to grapple with these decisions.
Today's plan is a compromise, at least for now. By far, the biggest challenge with M is his own fight against everything that would help him stay alive. Keeping oxygen tubing on him is a never-ending nightmare. Even so, today we are keeping him on oxygen. After morning breathing treatments, I was able to pull him back to 2L of oxygen instead of 3L, but still oxygen. We're increasing parts of his breathing treatments to four times per day. We are also starting him on oral antibiotics for the next week. If we decide to start the IVs early, his pulmonologist will start the process as soon as we ask for it. If he's not better by Monday, we may be there.
The hardest part of this dilemma is the fact that his LUNGS are not killing him. He has advanced lung disease from his CF, but it wouldn't be killing him yet. It's his liver killing him right now. Adult Cystics have described the sensation of breathing on advance cystic lungs as akin to scraping the lungs with glass shards, which is far worse when struggling with a lung exacerbation. So, though we struggle against his desire to not fight, we also have to balance that not supporting his lungs is one of the most terrifying and painful things he can endure. Above all else, we're committed to controlling his pain. There is no way to control his pain without supporting his lungs, despite his massive efforts to resist us on the lungs in ways he will tolerate liver treatments.
There is no good answer. Today, we are on a vigil. Right now, I am keeping him with his oxygen levels in the low 90s and we have a plan of action to try to support him through this viral cold infection. It may or may not work. We may or may not choose to get more aggressive. For the moment, he sleeps on his beanbag chair in the living room. II is sleeping on the couch and I've turned the Pappassaon into my spot for this vigil. Maybe we'll know by Monday which way this is going. I'm not certain it's going to go a good direction at this point. The child is losing what little will to live he had. We cannot fight HIM to keep him alive through many more crisis points.
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