When the head of the best neonatology unit around tells you “I am nervous,” the subtext is, “You should be nervous.” If you have already been nervous, you may find yourself nearing collapse.


Forgot to mention on Wednesday, she ordered an Anderson tube put in to help drain his bowels. (Goes down the throat into the stomach and is hooked up to intermittent suction.) Breen hated it. Was gagging on it, trying to get it out with his hands. He also had his G-tube attached to a large syringe to help drain air or excess fluid.

Doctor told us to watch the color on those drains, hopefully it would drain some clear gastric juices and vent some of the air. What she did NOT want to see was green or dark green. That tells her that stuff is really getting backed up and is another indicator (along with the mucous-y stool) that his bowels are blocked by something.

Not long after our “Sit down.” meeting, I went back to Breeny’s crib and the syringe off his G-tube was very full. Of very dark green fluid.


Surgery waffled back and forth on how they wanted to study Breen yesterday. First they planned a dye test as an enema up. The thinking is that if there is a narrowing or a blockage, it can drain back out the rectum and not be all packed in there. Later they said let’s just do a scope. Then (as the afternoon wore on) it was decided to do neither because they suspected the trouble was higher up. They would put the contrast in through his G-tube and watch it on the X-ray as it moved down.

The doctor warned that if they couldn’t see anything very obvious, they would continue to hold his feeds, wait a few days for the dye to clear out, then they would have to try again from the enema end. Breen, his nurse, and his RT headed down to radiology. I kissed him, I told him I’m sorry about all of this.

I called Rainbow Kids to see if our folks were around. They were not. (This was at like 4:00pm on a Friday in the real world.) I talked to another MD from the Rainbow Kids team who has been following Breen’s chart. He is a palliative care pediatrician. I was a wreck. I blathered all about the seriousness our doctor was emanating. He affirmed her expertise; he would be nervous too.

Once they could confirm it was a stricture, there would be no option other than surgery. It would have to come out. What would that be like?

After the test, no information was available. And when Breen first came back up, I wasn’t allowed back to see him. He was having trouble breathing and needed some manual breaths, so they added a “rate” to the CPAP. They thought his trouble was because his tummy was so full of the dye.

He’d gotten a new IV called an ‘extended dwell’ which reaches further up into his shoulder area, but not all the way toward his heart the way a picc does. This extended IV “blew” before they started the dye test. It infiltrated. There’s a chance he’s having trouble breathing because of the leaking fluid caused edema up in his arm.

Eventually he’s stabilized, and the Rainbow MD offers to walk back to the bedspace with me. We’re finishing our conversation about what another abdominal surgery would be like for Breenlet. I’d talked about other kids on palliative care, and how parents have had to decide when to stop. When enough is enough.

As we’re walking into Breen’s room, this MD asks me: What is that answer? For Breen?

Oh God. I don’t know. I guess I thought of that more for the tiny isolette babies that aren’t improving and in so much pain. I do not know that answer. And I walk over to the little bear with his elephant nose and I lay my head down beside him.

They take another X-ray, hoping that the dye has moved further down. So far, no signs of narrowing or a blockage. This is strangely disappointing, since them team is so certain that’s what they’re looking for. It means delay. IV nutrition. It means more tests.

They’ll continue taking X-rays every “handful of hours” all night. They’ll place a picc line so he can start getting TPN. His breathing is much better, CO2 coming down slowly, they take away the “rate” so he’s on regular CPAP of 6 like before this mess.

I called the night nurse around 4am, and learned that there had been two failed attempts at getting the picc in. She said they’d try again during day shift. They still haven’t figured out what’s going on in the intestines, but the dye has continued slowly moving all the way to the rectum.

We speak with the nurse and NP throughout the day. We are wildly grateful that he had two of his favorite caretakers both last night and today.

By 10:00 a.m. he has pooped A LOT.

By 12:02 p.m,

They no longer think it is a stricture.

They are waiting for the full radiology report, but since the dye has moved all the way through

They might slowly start feeds again tomorrow.

It could be that all of this was feeding intolerance.


B.BB, w. ?

Ghhvvvv. THBBbbbbttttttt. CH. Khhhhhh. PFlllfffffffff. Hptbb.

They think all the CPAP air, the slow increase in his feedings over last few weeks, not having good venting, the added protein…

Maybe they won’t need to place a picc!

NP expects that this will be a big part of his life: intestine trouble. But NP and Doc now think that we will not need surgery at this time.

At 1:19, they decide he will need a picc and they’ll send him down to the fancy room where they can check the veins with imaging. Just before 3:00, I have to give consent to the picc guy (who reminds me of all the risks) and the anesthesia guy. He will try to give sedation on a mask so he can stay on CPAP, but of course may need to be reintubated. In which case he’d probably need the ET tube for a while. “I consent,” I says. “We live at the hospital anyway.”

They will call when they’re done. An hour later, no call. Maybe they forgot?

Two hours later, Jon calls the hospital...

Picc is in! Still on CPAP 6!

He did not need to be re-intubated. He did great. No breathing trouble at all since yesterday.

Resting comfortably.

Later in the evening, it is confirmed:

Start trophic feeds tomorrow.

Parents of Breen and Nora.