Father Nose Best

June 13, 2025

Sunny had a rough weekend, and was dealing with a lot of reflux and vomiting. Her resting heart rate was higher than her norm, and she was just more irritable. The doctors paused increasing feeds through the g-tube in hopes that would help, but it didn't seem to make much of a difference. Monday was probably the most rough with her obvious discomfort from the reflux keeping her awake, despite her and our efforts to get her to fall asleep.

The team wanted to have a family meeting to just discuss our next goal and the next steps to take. During that meeting, Sunny's feeding was addressed as our immediate hurdle in our journey home. They laid out a couple alternative options to g-tube feeds, as we assumed she was having trouble with those. At one point, Chris asked if it'd be worth pulling her ND tube for a day or so and seeing if that helps at all. He had heard and read that ND tubes, because they go down the nose, through the stomach and into the small intestines, keep the pylorus(the opening between stomach & intestines) open a little and can cause reflux. So, rather than assuming it was her intolerance to g-tube feeds, experiment to see if it could be the ND & g-tube feed combo.
The doctors in the meeting said that it was a good idea, and it couldn't hurt to try. They decided they'd pull the tube Tuesday morning, proceed normally with the amount and timing of her g-tube feeds, and give her IV fluids to make up for the lack of ND feeds.
After the first g-tube feed after they pulled the ND tube, she puked about six times. But after that in the following days, we had only about one vom a day. Better than the weekend, but she's just been just a taaaaad off this week. Her resting heart rate was higher, she's needing more suction, the puking, etc....BUT they did a viral panel and it all came back clear, which is good but at the same time confusing.

Yesterday, the pulmonary crew came by because the team asked them to stop in. Even though Sunny's numbers all looked good, and she wasn't showing any signs of increased work of breathing, they decided to give her a little bit more pressure support. She's still on CPAP, and the pressure support(air that's constantly blowing) level was a really low setting before bumping it up a smidge. It's still very low, but it seemed to do the trick! I came in this morning to see her normal sleeping heart rate, and the nurse said she had a great night, only fussy when she needed something and overall good!!

Wednesday & this morning at rounds, the Doctor on this week brought up how good of an idea it was when Chris suggested removing the ND tube, and she's pleased with how Sunny is progressing since then! She has the most attentive father, he's such an amazing advocate for his baby girl.
She's doing well with the g-tube feeds, and they've been able to make small increases during the week. It's SO nice not having the tube in her nose, and she's so happy to not be in hand-jail anymore because she lovvvves chewing on her fingers.

Another hurdle discussed during the meeting Monday was that of in-home nursing. The four agencies that are looking for staffing for Sunny are still not having any luck. The team was trying to think of some options to be able to go home while still looking for care. One of the options was bringing in a few additional people for some trach training. Less extensive than the 8-week course we did, but able to help care for Sunny during nights until they're able to find nursing staff. They also mentioned a couple more options, so we're looking into alllll the things:) The staff here is so sweet - multiple nurses and nurse practitioners said if we didn't live as far away, they'd be all over volunteering and covering Sunny's night shift needs. We love their love for her so much, & we love them for caring for her so well.

Prayer requests:
- Finding great in-home nurses for Sunny
- For her G-tube feeds to continue going well!

Thank you for your prayers, and for you love for Sunny! We are so grateful.

Love,

Chris, Alyssa & Sunny