CPAP 6, G-tube, a new fright, high flow

A lot of updates.

It was so wonderfully, eerily quiet with Breen for a while. That’s why yon blog was eerily quiet.

We looooved having Uncle PJ here from Tuesday 6/8- Saturday 6/12. It was especially timely that he was here the night of the G tube debacle. Having my brother in the same room as me was like temporarily seeing (if not joining) the orbit of that whole Breen/Rengstorf-ian family.

If you’re just joining us, Breen is my maiden name. Baby Breen Richard is named after his Uncle PJ Breen, his Aunty Al Breen, his maternal Grandpa and Grandma Breen. The middle name Richard is after his paternal Grandpa. In honor of. His last name Armstrong honors our great clan Armstrong: Nonna Elaine, Aunty Jo, and all their branches out.

We checked back in on 6/15 and 6/16. Steady breathing, hugging, snuggling, and Jon’s all-time-favorite NICU days (thank you physical therapy) happened 6/17–6/19.

Sunday 6/20, we celebrated both father’s day and (Breen ’n’ Nora’s) Aunty Jo’s birthday. Aunty Alanna flies in from South Carolina to help with Nora for the week while Jon goes up to Pocatello for work. Welcome, Aunty! Have fun in Pocatello, Dad!

Weaned his CPAP to 6 on Monday, 6/21, and it went great. The long-term goal is (was) high flow oxygen. Breen’s attending physician last batch of days was a specialist in weaning kids off of CPAP, and she wanted to try him on CPAP 6 for a week, then wean over to a different nasal cannula called RAM. It would help keep up pressure support which helps the lungs keep growing, but would be less irritating to his little nose-face.

On Tuesday, 6/22 (birthday greetings, Uncle PJ!) things got weird. The nurse that day was concerned about part of Breeny’s G-Tube. It’s called a Farrell bag, it’s connected to a separate branch off the G-tube tubes so extra air can go somewhere.

A Farrell Valve Bag attaches to your child’s feeding tube. These bags allow extra air to vent (escape) from the stomach. Venting prevents the stomach from becoming swollen, hard, or painful because of the build up of air (gas).

The nurse was concerned because it was so difficult to open the valves on the little connector, so she replaced the little connector. She then called the NP to ask if he even needed a Farrell bag. It wasn’t in the computer as one of his “orders”, so they removed it.

I haven’t been to G-tube class yet, but word on the street is that with very small people, it’s questionable how much help the Farrell bag really provides.

Throughout Tuesday afternoon, Breen’s abdomen (girth) got bigger and bigger. It became firm to the touch. I was there most of the day, and asked about it as it worsened. Nec is always in the front of NICU’s mind, but they always check for a few things: bowel sounds, cap refill… These things looked fine.

By night shift the NP ordered a KUB X-ray. While waiting for it, the night nurse asked has Breen ever had a Farrell bag? Yes, actually. Until today, in fact. She promptly put one on, and his girth came back down over next couple hours. The night NP added the Farrell bag to his orders.

The X-ray just showed gaseous distension. The bowels are dilated because they’re full of what looks like air. No air outside of bowels. Guess the Farrell bag is helping.

Wednesday got concerning. At 4 am, the night nurse found Breen’s G-Tube was leaking very badly. When I got to the hospital, Breen’s nurse was walking out of his room looking stricken. She said he’d had a bad desat down to 50, turned purple, till they realized his nostrils were blocked. Since the CPAP masks have been breaking down his skin, they put this gentle waxy tape to act as a barrier. It had bunched up and blocked his nostrils.

Isn’t it great that it was a mechanical failure, and not a Breen failure? Folks said? That was an easy fix. But it was jarring. We don’t desat anymore. That’s behind us. What the heck?

NP said to call wound team and surgery (Jon’s fabled feral cats). She was very concerned and wanted them to check Breen’s leaky G-tube. She think the balloon that holds the tube inside the stomach wall is leaking. Which could be why he was able to push it out a week and a half ago.

The bedside nurse was still shaken up and distracted by some personal things. She left the room in tears, radioed back to ask the neighbor’s nurse to take over, and left for the day. We learned later she’d been holding Breen during the episode.

The other nurses in the room were unfamiliar with Breeny. A flurry of phone calls to wound team and surgery and the NP, a series of questions to which the new nurse didn’t know answers. They didn’t have room on the schedule to look at his G-tube.

G-tube G-tube G-tube. Let’s get this fixed.

Yesterday, Thursday 6/24, the phone rang early. Uh Oh. We are worried about Breen’s girth, it has gone up again. Stopping feeds, checking for infection markers. Put in an IV so he can get fluids and meds. Breen has another desat into the 70s during cares. Get another KUB X-ray. Gaseous distension. Will take another X-ray in 6–8 hours.

Is the Farrell bag still attached? Yes. The radiologist doesn’t think it’s nec? Not at this time. During the call, bloodwork results are coming back as normal. What is causing the buildup? Since he is still moving gas and stooling, they do not think it is a stricture or obstruction.

They think the CPAP is just shoving too much air into his tummy. But it’s a difficult time to try to wean his respiratory support, because he is so bloated. Just like when you’re pregnant or after a big meal it is hard to breathe, his lungs are being compressed.

I walk into Breen’s room and my heart squeezes at the sight of the IV. I hold him. Nurse returns from rounds. We are going to try him on high flow of 8. Today.

!!?!

Do his cares, change his respiratory support thereby achieving a wildly massive milestone, pump at the bedside, get another X-ray, put in a catheter to draw urine to check for UTI, clean up a weird looking poo that he pushed out during catheter insert. I walk out planning to visit restroom and drop off milk at the milk bank and get something to eat.

I run into the attending physician. The exceptionally knowledgeable and experienced head of this world-class NICU who admitted baby Breen off of the life flight. She was just coming to talk to me.

Let’s go into this family room and sit down.

Uh oh.

She thinks the gaseous distension in his bowels is being caused by a stricture or an obstruction. Scar tissue can build up around the sutures where things were reattached, making the intestine too narrow for things to pass through.

These normally appear about six weeks after takedown surgery. Which is exactly where we are.

I pause.

I try, “But this morning they said since he was still stooling they thought it was not a stricture or obstruction?” This does not change what I am being told. The recent weird-looking stool indicates it is getting harder for things to pass through.

If it’s very bad, it will require surgery. Which no one wants to do. It increases the risk of more strictures and obstructions around the new sutures. It decreases his already short gut. It would involve being reintubated. We call Jon (still in Pocatello) to tell him everything.

Will take X-rays every six or so hours. Will order a dye test to see better what is going on inside. Continue IV fluids, no milk. He is doing extremely well on the high flow.

Surgery comes by and says they will put in a new ‘button’ G-tube once his girth comes down. It is not a surgery, he won’t need sedation and can stay on high flow when they do it.

It is so nice to see his face and hair again. He is doing extremely well on the high flow.

Friday 6/25

Breeny’s girth has come back down.

It has been amazing to have Aunty Alanna here this week. Immeasurably helpful. It is getting hard to count how many times our family has dropped what they’re doing to take care of us. Friends too. Thank you guys. Thank you.

He was suffering from morphine wean during the night, so received two extra doses. Darn. Morphine slows gut motility. Which is already slow. But there’s no food in there. But he’s resting comfortably now.

He is doing extremely well on the high flow.

He will get the dye test some time today.

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Parents of Breen and Nora.

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Jon and erin! Armstrong

Jon and erin! Armstrong

Parents of Breen and Nora.

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