OK, it might be time to start freaking out

10/6, Jon

We had our care conference yesterday with Dr. O, Breen’s pediatrician Dr. P, occupational therapist, physical therapist, bedside nurse, head nurse, and the social worker.

It was a wonderful meeting that was centered around coming up with a discharge plan. We discussed some specifics about administering breathing treatments, G-Tube stuff, vaccines, home health, home therapy, and what kinds of gear we would need at home.

It was easy to get caught in the details during the meeting, but at some point I ask: “Wait, what are we talking about? When do you think he can go home”

“Perhaps as early as next week”

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…

We’ve heard stories from other NICU parent veterans that once things start to move towards babies going home, they go home quick. It makes sense. We’re talking about a Newborn Intensive Care Unit. Once they don’t need intensive care, it’s time to go home.

It’s time for Breen to come home.

“I thought he had to get to 1/4 liter or even 1/8?” I ask

Apparently not necessarily so. They said we’ll be going home on an O2 delivery system that can go up to 5 liters and perhaps above. They would feel comfortable with him going home on the O2 he’s currently on.

The big steps left are:

• Getting Erin and I all the take home gear for O2 and G-Tube
• Having someone come to the NICU from home health to teach us how to use this take home gear
• Adjust the timing of his breathing treatments and G-Tube feeds so that they correlate to what his home schedule will be

Then, Breen comes home.

Home. My God.

“Should we pull Nora from preschool”

Basically a resounding yes from all parties. The benefits just don’t make the risks worth it. Dr P says it bluntly, to paraphrase:

“What would look like a runny nose for Nora could very well put Breen back in the hospital intubated”

His lungs are just that rough. Get through flu season then you can reassess. For flu season? Be paranoid.

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After the meeting, Dr. P came back to Breen’s room and wanted to show us how to change his G-Tube, like the actual tube that goes into his stomach.

She asked if I’d like to do it, and she could walk me through it.

I was thrilled. I didn’t get to cut Breen’s umbilical cord, but this’ll be the second time I get to put a catheter into my son’s stomach. It’s our little ritual.

The old one came out great, and the new one went in great (it’s still kind of weird, so I’ll spare you the details), and Dr. P was an excellent teacher. She’s a G-Tube specialist, and has a very casual approach to G-Tubes in general, which is exactly the kind of vibe you need around G-Tubes.

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We don’t have a go home date on the books, and we likely won’t until shortly before we take him home. The social worker has already hit the ground running calling over to home health, my insurance, medicaid, medical supply companies, etc to get all the suppliers and providers ready for us. He’s been amazing.

Dr. O bumped Breen up to 100% FIO2 and down to 1 1/4 liters. He’s been great all day, high satting. She says she wants to take it slow. Perhaps he’ll go down to 1 liter tomorrow. Then we chip away bit by bit.

And we wait. Shaking. Out of our minds. Bliss. Fear. Joy. Excitement.

New.

Freaking out.

It’s gonna be new. It feels so normal to have him home, and so foreign.

—

It might be time to start freaking out…

This impossibly long journey, this 50 mile tight-rope walk, this medical calamity, this incredibly boy. He’s coming home.

And then we start a new journey. Not necessarily a 50 mile tight-rope walk, but more like we move out into the woods. Into the elements, and make camp for our new family. Our family of four, who has received so much love, gifts, support, and generosity from our friends and family. From you readers. From our village. The Armstrongs. Fragile yet strong.

Nora.

She gets her little brother coming home. Pretty sweet trade for preschool.

With love to all, more soon we thinks.