A couple posts ago I mentioned how the trach was falling out, went to the ENT, was supposed to have surgery, yada yada yada. In the process of copying all of the posts from the Caring Bridge site I realized that I had forgotten to tell an epilogue to that story.
Now I say “an” epilogue because “the” epilogue is still being written. But see, I’ve already gotten ahead of myself.
Exactly when Suzie and I first noticed the trach was not sitting correctly is lost forever in the annals of history. Returning home in December from eight days in the hospital was challenging. We were dealing with my pneumonia, the holidays, wound care, her and Clara traveling, my family in town, another hospital visit in January… We had a few things going on. The truth of it is that I was in pretty bad shape; spent a lot of time struggling to breathe. O2 stats were terrible. We were focused on just trying to keep the lungs clear by sucking out mucus.
Sometime in early February we started having trouble getting the suction tube through the hole in the trach. Not every time, just some of the time. One thing led to another, which led to another, which forced an appointment with the ENT. For reasons that are not exactly clear, it always takes a couple weeks to get in with that guy. We saw him on February 23 and things quickly started to get better. This was covered in the March post. If you missed it, it can be found here.
Things generally improved throughout March. Coughed less. Used the nebulizer less frequently. And generally felt better as the month progressed. Not 100% mind you, but certainly better.
April 4 was a Tuesday morning. Clara went off to school. Suzie walked the dog. When she got back we set up a nebulizer treatment and she went off to make herself a coffee. While she’s gone, during the treatment, I cough up what I think is a glob of phlegm which flies clear through my mouth and hits the nebulizer’s mask. (My coughing is much improved.) When Suzie comes back in I say, “Hey, I coughed something up into the mask that we should probably clean out.” She asks me, “Where?” Slightly flummoxed I’m like, “I know I coughed up something and it should be in the mask.” “Dude, there’s nothing in the mask…. Oh, wait.”
“What the hell?”
There was nothing in the mask. It was on my shirt. Suzie started reaching for a pair of gloves. Putting them on she decided they weren’t enough. She thought it best to pick up whatever it was, using a piece of gauze in her already gloved hand. When I saw it, I didn’t blame her.
It was about the size of a peanut. Kinda shaped like a kidney bean. It was covered in blood. And I had just coughed it up.
What does one do in a situation like this? There was a lot of ‘thinking aloud’. Should we go to the ER? Maybe skip the ER and go straight to church. Call 911? What on earth would you tell them? “911 what’s your emergency?” “Hi. Yes, um, I’m a 52-year-old male, quadriplegic, and I just coughed up a baby alien.”
In the end cooler heads prevailed. It was decided that we would simply do nothing for a few minutes. Suzie kept asking me if I felt okay; I felt pretty good actually. The object was secured in a Ziploc bag. At that moment the situation was under control. We had a lot of questions, but there didn’t appear to be a medical emergency.
I called my primary care physician’s office, explained that I just coughed something up, and wanted to see somebody that day. They had an opening that afternoon, so Suzie and I started making preparations to go see the doctor.
Because I’m something of a frequent flyer over at the medical office, I know my primary care physician pretty well. I also know his partner who is the hospitalist and would see me every day whenever I was admitted. While Suzie and I are sitting in the waiting room, in walks the partner. After the perfunctory “heys” and “how you doing” he looks at me sternly and asks, “What happened to your trach?” So I relay the story about the trach falling out, going to the ENT, and not wanting to have surgery. He says, “I agree with the ENT.” We chat about a few movies, tell him that we are there to see my primary care physician, say our farewells, and he disappears into the office.
Not two minutes later the partner reappears, says the PCP is busy with something else so we get the deal with the partner today. Once settled in the exam room we get through the coughing up a bloodied peanut story and show the doctor whatever it was in the Ziploc bag. He considered reaching into the bag with his bare hand but corrected himself. Once gloved up, he looked at it. He poked it. He squished it between his fingers; it had the consistency of squeezing two gummy bears together. He had no idea what it was, but we were all thinking the same thing so he just went ahead and said it. “I think this is a piece of lung. You need to go have a bronchoscopy today. Like right now.”
Somehow I was already prepared for that answer, Suzie however was not. I think it was the look on her face that made the good doctor quickly reconsider and start back–peddling. “Wait. Hold on. Forget I said that. Let me go get [my PCP] and let’s see what he says.”
It doesn’t take long and in walk both doctors. We get past the hellos and my primary doctor asks, “What happened to your trach?” So, again, I go through the story about the trach falling out, the ENT visit, and not wanting surgery. And he says, “I agree with the ENT,” then he turns his attention to the baby alien. He looked at it. He decided he better put gloves on. Then he poked it. He squished it between his fingers. After a moment or two he’s decided what it isn’t, “It’s not a piece of lung tissue.” But no opinion on what it IS.
While my primary doctor starts looking for something in one of the cabinets, the conversation returns to the subject of my trach. We talk about the potential need for suctioning, oxygen levels, CO2 levels, risk of infection, and whether it would be difficult to schedule the surgery in the future. But one point I asked, “Am I supposed to go the rest of my life with the trach?” Both doctors simultaneously replied, “Yes.”
With that, my doctor – who had been poking at the glob with the wooden end of a Q-tip – stops what he’s doing and says, “Maybe you don’t need the trach. And maybe this is the best way to actually find out if you need it or not. You have been without it now for what, six weeks? If you make it three months you might be okay. If you make it six months, you will probably be okay. If you make it two years, I’d say you’re out of the woods.”
Taking a look at the progress of the Q-tip peanut surgery, everyone could see that it was starting to come apart. Not in chunks, like meatloaf. It was not disintegrating, it was unraveling. It was like a long worm that had been bunched–up and folded over. It was a giant jellybean shaped gummy bear of a blood clot. The trach had already been out for six weeks. How long the clot had been there no one knows.
