HuCART: 6 month CHOP visit part 1

Part 1

We are back from Philadelphia with everything and nothing to show for it. We had expected to have Beau’s 6 month LP and BMB performed, but the procedure didn’t happen because of a cold that he had been brewing for a couple days and seemed to hit it’s peak at the exact moment the anesthesiologist came to assess him pre-procedure.

In hindsight, I could have seen it coming. Actually Tuesday I was thinking all day that perhaps we should just delay the trip. But there were a lot of logistics to that and really, what harm could a couple sniffles do? I knew that sedation could move forward with a head cold, it was the chest congestion that would complicate things and as far as I saw he was just sniffly. Aside from the headache. The headache Monday that was his first and only symptom that day and naturally left me completely spun out that he was relapsing. He work Tuesday morning with sniffles and I cried with gratitude. How thankful I was for a virus. So thankful that I wasn’t thinking clearly enough to just push the trip.

So we went to Philly, upon arrival hit up the airport for another COVID test, to double check since his symptoms were on the rise since his asymptomatic test Monday morning. The next morning we went to the hospital.

The anesthesiologist explained that sedation is like driving 55mph down a 55 mph highway. There are risk, but generally a good driver is safe. Introduce a head cold and its like driving 75mph down a 55mph highway. Introduce chest congestion and it’s like black ice. He said, being the, self addmittedly, most liberal anesthesiologist at CHOP, he was comfortable to drive 85mph.

This metaphor made me just want to take a back road. How about we avoid highways altogether?

He explained that these worst case scenarios had been seen 3 or 4 times in the 15 years he had been at CHOP, where they do 15-20,000 sedations a year. And most likely everything would be fine and, if anything, Beau may need some extra time inpatient if his lung collapses.

Last time we were told that most likely he would be fine, he ended up relapsing with the a rare relapse case. I am kind of immune to the comfort of most likely.

The team left it up to me. Very kindly explaining that there was no right choice, or that the only right choice was the one that I was comfortable with.

I am not comfortable with any choice. So where does that leave us.

Sometimes people talk about following your gut and it sounds like this poetic call to arms. But what about when your gut has been rolling for years because everything you thought you knew was wrong. There is still intuition, no doubt, but there is also layer upon layer on an inner self so hell bent on protection that it’s hard to know if anything feels comfortable.

It felt insane to cancel the procedures. We’d flown all the way there after all. I felt sure that Beau would be fine, but the small mention of lung deflation and overnight stays in the ICU had me on high alert.

“AVOID THIS AT ALL COSTS,” my stomach churned.

“He will be fine.” My mind reminded me.

“I guess we have a better chance of our plane crashing on the flight home and yet, I just don’t feel like I can move forward with it,” I spoke aloud.

The team was supportive and kind with the choice. They were affirming that the right choice is the choice I make, and thus this was exactly as it should be. There was no annoyance, which as a people pleaser, I was very thankful for- always worrying how my decisions will fall out on others.

We decided that we would reschedule the procedures in Denver, in two weeks.

Beau had be squirrely leading up to his access. It used to annoy the shit out of me, and my people pleaser, but I have come to see it as his stress language. He is about to have a 2 inch needle pushed into his clavicle, if the worst he behaves is by spinning around the exam room on a stool squealing like a robot, is it that bad? At some point we do have to bring his energy down, because access requires a sterile field and he can’t be flailing about. Inevitably, as though he knows the exact steps to the dance, it involves him being silly and me being stern. Silly, stern. Silly, stern. He bends until I break. “Beaudin, calm down!” I say stern enough that even the nurse stops playing along with his joking. Finally, stern enough that he deflates. He sits still for cleaning with no character at all. A statue. He is not angry, but he is only a fraction of himself. Perhaps that is what we need to be to have a needle places in our chest.

None of this makes sense.

Immediately after access, with the 2″ needle secured into him, taped down and capped, he returns to himself, the full amount of silly never recovered.

We have the entire 55mph black ice discussion casually while he plays on his iPad. I sit on one side of his bed, his CAR nurse and CAR doctor on the other, the anesthesiologist at the foot. Ping ponging the sense making back and forth as though Beau is nothing but the net.

The anesthesiologist leaves and I tell Beau we aren’t doing procedures after all. I am never sure how much I need to explain, given he sat through the entire conversation. I know he isn’t entirely listening, but is he entirely not? How closely would you listen if the people in the room were talking about your likelihood of ending up in the PICU?

I give him the high-level of this turn of events and he complains about how dumb it is that we bothered to access his port if we weren’t even doing anything.

“Well, Beau, we didn’t know we weren’t going to do the procedures.”

“Right, but this was dumb either way,” he replies without even looking up from his screen.

He’s not wrong.

Later that night when Meemaw drives us home from the airport Beau tells her that I made him get accessed even though we didn’t do procedures. I notice what it feels like for him to claim this to be my fault. It’s ok. If this is the sense making for him, I can hold that. Maybe eventually he will understand what it means to make decisions about letting someone else drive your child on a highway with black ice. Maybe not. I am not able to hold it because someday he will understand. I am able to hold it because no matter what, I am his mother.

You can read Part 2 of this update here.

4 thoughts on “HuCART: 6 month CHOP visit part 1”

  1. Thinking of you so often and broken-hearted/hopeful/unsure/hopeful as you lead us in your writing. Love you- Adrienne


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