The Greatest Zoom Call That Ever Was or Ever Shall Be

9/29, Jon

Flow — Amount of liters/minute of oxygen going through nasal cannulas

FIO2 — The percentage of pure oxygen that is blended into what is going through nasal cannulas

Blood Oxygen Saturation (SPO2) — The percentage of oxygen in your blood at any one time

Breathing Rate — Amount of breaths per minute

Breen was stalled out at 5 liters/minute of flow for some time, maybe a couple weeks? I dunno. As a reminder, time has no meaning in the NICU. It’s a parallel universe of miracles and tragedies. Time is measured in weeks, and also in 12 hour shifts, and also in diapers, and also in songs, and also in naps, and also in the amount of times you have to unplug wires and tubes in order to untangle them and then plug them back in.

The strategy since we went back up to 5 liters was to park it until Breen was able to stay consistently around 25% FI02. This past week, he been hanging mostly between 30–32%, and there was no talk of weaning.

So we talked about trachs with our doctors at Portneuf. Were we kidding ourselves that Breen could eventually pull this through? What are we waiting for? When will we know? How much more time does he need?

Dr. O suggested a care conference with Breen’s pulmonologist down at Primary Children’s Hospital, another Dr. L (there will be three Dr. L’s in this story). Maybe we’ll say Dr. PL for pulmonologist.

Dr. PL set up a zoom call for our care conference today at 3:30pm. Erin and I didn’t know who to expect, but we figured it’d likely be some folks from Portneuf and Dr. PL from Primary.

Erin and I were both very nervous before the call. What would they say? We were bracing for a gut punch.

When we got on the zoom call we saw an incredible collection of brilliant folks from Breen’s past and present. Both Portneuf neonatologists were there, Drs O and L. Joining them from Portneuf was Breen’s wonderful occupational and physical therapists, an amazing RT, the head nurse, his dietician, his bedside nurse, and a social worker! And then joining from Primary were two of Breen’s beloved neonatologists: The astounding and brilliant Dr. L, the woman who said yes to Breen way back in February and the head of Primary’s neonatology department. And Dr. Y, the doctor who had Breen early on in late February during a really terrible time, and kept following up with him throughout our time in SLC. The same Dr. Y who fought so hard and advocated so passionately for us to get back-transported in early August. Both heroes to our family, cherished protectors and healers for wee Breen.

There were quite a few other neonatologists and specialists there from Primary as well! 16 squares, perhaps 21 or 22 people in all. There to talk Breen, one of our very favorite subjects. A lattice of care, and love, and passion, and genius. We were honored.

Erin was there at the NICU snuggling that little dude, and the doctors and specialists from Primary oohed and ahhed at our little chubster.

We started with his growth charts, and impressive weight gain. Some talk of recalculating his protein to encourage more length and head circumference growth. We went over his current breathing treatments. We went over this and that.

The big question came from Erin: If Breen is headed for a trach, should we start moving in that direction sooner rather than later? How much longer should we wait?

Dr. Y stepped in and said something to the effect of: “Are we all talking about the same baby? This baby I’m looking at? He’s doing great! He looks great! He’s gaining weight, and is thriving”.

The pulmonologist agreed, at this point, 6.3kg on 5 liters, you’re really far along and it is very unlikely he’ll end up on a trach. We looked at his lung x-rays, and they all agreed that they don’t look great. But that’s the same Breen, the same lung x-rays we’ve been looking at for months now. Signs of chronic lung disease, signs of BPD (Bronchopulmonary Dysplasia). White cloudy lungs, a combination of inflammation (from damaged alveoli and damaged lung tissue) and secretions.

Dr. PL suggested a hypertonic saline solution to be administered into his nasal cannulas in order to get Breen to cough up more secretions. Talk of more frequent Chest Physical Therapy (where they lightly pound his chest to loosen up more of that gunk). Maybe these adjustments will help clear his lungs out better?

Then a radical suggestion was made… who… Dr. PL? Dr. L from Primary? Dr. Y…. I can’t remember who: “Why don’t you turn the flow down to 2 liters, and the FIO2 up to 100%.

Drs. O and L from Portneuf, we’d be ok with that.

What….?

Dr L from Primary asked about “Effective FIO2”, one of the other neonatologists said he had a calculator standing by. He said where Breen is currently, flow of 5 liters and averaging 30% FIO2, translates to something like 50% FIO2 at 2 liters, and 100% FIO2 at 1 liter.

All the brains in the zoom started to agree. Turn Breen’s flow down to 2, crank the FIO2 up and see what happens. “Should we wait a week?”. No. Do it today.

The concept, well at least as far as I understand the concept is: When Breen does come home (on 1/4 or 1/8 liter of flow), we won’t have that FIO2 blend knob like they do at hospitals. He’ll always be on 100% FIO2. In the hospital, they try to stay away from that since O2 can be damaging to these tiny fragile bodies. But with less flow, it’s less harmful, so there’s a balance between flow and FIO2 that they strike in the hospital. The idea is that from here on out, we’ll leave his FIO2 at 100%, and see about weaning flow, which sets Breen up for what he’ll be getting when he comes home.

Everyone on the zoom call said their goodbyes, and Erin and I attempted to expressed our profound gratitude. How can you express infinity? Growing up Buddhist, we’d read passages from various Buddhist monks, priests, and philosophers. There was often talk of eons, and these fun little poems to express how long an eon was.

• If a Monk walks by a boulder and wipes his sleeve on it once every thousand years, an eon is the time it takes for that boulder to turn into a pebble.

We are an eon grateful for everyone who has watched over our son. We can never in our lifetimes express the depths, the vastness, our gargantuan gratitude.

It was incredible to see such a powerful group of brilliant minds all there to talk about Breen. What a bunch of brains. It was like the neonatology Avengers. I cried looking at all those boxes filled with genius, focused on our son. Our incredible boy.

—

After the meeting, the Portneuf RT came into the room and made the switch. Flow to 2 liters, FIO2 to 100%. And here we are now, only 6 hours into that switch, and he’s doing great. He hasn’t changed his respiratory rate, showing us that he isn’t working too hard. And his O2 saturation has been up around 98–100%. A saturation that high would normally encourage weaning the FIO2, but the doctors are being extra careful with him on his first day with such a significant change.

Erin said Breen was asleep when they switched, and woke up briefly when they turned down his flow, like: where’d it go? 5 liters is actually quite loud, so perhaps it’s like when you turn off a box fan after leaving it on for hours and hours. The silence might be deafening to him.

Here’s the real big news though: BABIES CAN EAT ON 2 LITERS OF FLOW!!!!!!!! The PT and OT were both ecstatic at this. They are going to try a bottle… A BOTTLE!!! tomorrow with Erin. Are you kidding? Our 8 month 4 month old baby, and he’s about to try his first bottle. Also, he’s been doing great with the oatmeal mixed with breast milk, and now can work up to larger amounts. Our little eater gets to eat!!! This is outstanding news. He’s gonna be so excited to eat!

There’s a lot of fine tuning over the next few days. They are talking of 5 liters at night and 2 liters during the day. They are talking about not worrying to wean his FIO2 anymore, but to just work on his flow. Maybe we try for 1.5 liters at 100% in the days ahead? Maybe 1? Maybe…. Oh God, dare we hope…

For the moment though, Breen sleeps. Portneuf celebrates, and Erin and I vibrate in nervous joy. Nervous joy, that’s about the highest life condition you can achieve as NICU parents. The best you can hope for. For the moment, we’ll embrace it as best we can.

With love to our lattice of care.