Trach clinic ra ra ra

tricky lower lobes
I don't mean tribal earrings
we're talking lungs here

We had trach clinic this morning. It's a tedious day where we see the pulmonologist, the ENT, the RT, the dietitian, the social worker, sometimes an ST (not today), the trach nurse, and other people. Today we were there from 8:30 to 11, which wasn't so bad at all, even if it was still completely exhausting. We've had trach clinics that start at 8 where we don't get home until after 1. (Matt, if you're reading this, you can tell me to shut up. I know you guys have way longer clinics, don't you?)

Of course, as soon as we got checked in we were taken back for vitals and the guy who does them (super extra nice guy who calls me Mami, which I find very endearing) has a drippy nosed cold. My husband was all, "So, allergies are really bad right now, huh?" But, yeah, not allergies. So we're at trach clinic for all of five minutes before we're exposed to g-e-r-m-s. And not just g-e-r-m-s, but RESPIRATORY germs.

Stab me.

We manage to get height, weight, b/p, SpO2, temp done with minimal touching, and the guy did wear gloves and a gown. No mask, though. He should have had on a mask. I should have insisted he wear a mask. I was just horrorstruck and could barely think of anything except "don't touch my baby, even if you call me Mami."

Then the traveling parade of specialists and doctors begins, and my husband and I get some good upper body weight training by trading off who gets to hold Ike and keep him from touching anything.

We saw the pulmo first and he was very nice, as usual. He's happy with Ike's weight gain, and happy with how his lungs sound, but he's less happy with the resistant strep pneumoniae that grew in the last trach aspirate culture. We'll have more of a plan when the new cultures come back. Maybe it's gone. Maybe we treat with Levaquin (which, yikes). Maybe we do nothing. Maybe we go in for some Rocephin shots just before heading to Cincy and keep our fingers crossed.

One of the mysteries we wanted to solve today was to find out why Albuterol and Xopenex cause Ike's sats to drop. Not only do they drop his sats, requiring him to need o2, they also CAUSE him to be wheezy. Dr. F says it can go two ways:

1) Ike has undiagnosed bronchial-tracheomalcia and because those meds are smooth muscle relaxants they cause Ike's airway and lungs to become floppy and collapse in on themselves. He was diagnosed with laryngomalacia as an infant – but that's different. It sometimes goes along with the others, though. We would hope, that with bonchial-tracheal malacia, it would have been discovered before now. When they do the scope in Cincinnati, we'll know if he has this or not. It could be a significant factor in whether we can take the trach out or not.

2) Ike has pockets of atelectasis (small areas where his lungs are collapsed). When the medication is inhaled it opens up little airways to these areas. Usually, nothing will flow to these areas because they are collapsed and no o2 can get in. So when the little airways are opened, o2 flows through them, but has nowhere to go (because of the collapse) and it makes his overall o2 intake inefficient.

We all think 2 is the most likely of scenarios because Ike is notorious for having atelectasis. But if number 1 is in play (which our Pulmo doubts, but, of course had to talk about and scare me with anyway), the whole gameplan could change dramatically.

Because of all this, the pulmo isn't convinced Cincy will do the surgery this summer. He keeps saying
"we'll hope for the best," but he said it's going to be tricky because
Cincy will want Ike's lower lobes clear, and that's where he's prone to
atelectasis. It will all depend on what they see with chest CT. We could have a CT done here to give us a sneak peek, but it would have to be redone in Cincy anyway because they will want their own techs to do it. And because we want to minimize the amount of times Ike has to have anesthesia (and be exposed to radiation, since he's been exposed so much already), we will wait.

So there's that. It's nothing hugely terrible, it's just a bit of reality injected into my hopes and dreams. Fucking reality, you can suck it.

Then ENT popped in, asked why we didn't consider doing the LTP in Austin (When was the last LTP done in Austin? Can't answer the question, you have your answer. Duh.). Then ENT popped back out again.

More visits from other people. More bottles thrown on the floor. More discussions of what happens to our nursing and Medicaid as Ike's plan of care changes. Blah blah blah, why doesn't anyone hand out free coffee and breakfast tacos when we have to go to these things?

I always kind of hate trach clinic.

2 thoughts on “Trach clinic ra ra ra

  1. Thanks for the detailed update. I don’t know how you have the energy to write all that after such a grueling morning. Stay strong, Mami! You are doing great.
    I sense a business opportunity out there for an industrious taco / coffee vendor. Get to trach clinic, STAT!
    (Or, even better, have friends bring you coffee and breakfast tacos.)


  2. Since you all have Medicaid through MDCP, your hours of eligibility are reviewed only 2x per year (I think) by their requirements, but I always call when things get worse to make sure there’s not something else little man might be entitled to due to extreme sickness. If things get better…well, then you won’t want all of that pesky help anyway. Right? Man, bottom line: double edged sword = all of it. With stabby handle as well.


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