Support Registry Update

2 Weeks of NICU: NEC Day 2

Trevor & Trina Symons photo
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Trevor & Trina Symons
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Necrotizing Enterocolitis has absolute taken the wind out of my sails. We both spiraled a bit yesterday, going over the what-ifs, because the what-ifs aren’t small chances.

We started the day with an early phone call at the end of night shift. James had a large bloody stool. They immediately started a work up of serialize labs, X-rays, and replaced his feeding tube with a suction tube. His initials were concerning.
0600
WBC 21.2
XR abd showed large nonspecific gas patterns

We arrived and shortly after talked with the neonatologist, had a conversation about NEC, and that this is the current differential we’re working on as things look that way. 

Of course that led into a whole bunch of literature review of NEC, learning more about it, and becoming terrified of the plethora of short-term/long-term outcomes because again, this is a very serious thing.

1000
LA 3.6
WBC 13.9
XR: progression of air through the bowel, no perforation

As we progressed through the day, James continued to look just fine. Not showing any signs of pain, no worsening signs of infection. Just doing his normal things. His lab work improved significantly once the workup started and he got his abx and TPN. Other things happened. He finally got his echo to confirm his PDA. No big deal there as we haven’t had any shunting issues otherwise.

1800
LA 2.0
WBC 13.4
XR: progression of air, no perforation, thickening of the bowel d/t inflammatory process

0000
LA 2.1
XR: persistent pneumatosis, no sign of perf

0600
LA 1.4
WBC 13.2
XR: no pneumatosis? No perf, persistent air.

Plan as of this morning is to continue to keep him NPO for about 7 days. Overnight he’ll likely get a PICC for his TPN as long as his blood cultures that were drawn yesterday morning continue to stay negative. We'll continue IV abx for the 7 days as well, and continue to serialize blood work and XR, but likely will start to decrease frequency in the next day or so.

James is stealing so much of our mental health so early on - he’s kind of a jerk for that.


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Comments

Jackie Vogelzang 12 days ago

Praying for his health and your (and Trina’s) physical and mental endurance through all of this.

Sheila Schmidt 12 days ago

Stay strong you guys…and I mean all three of you. Prayers for James, his team and for you and Trina too! 🙏🏻🙏🏻🙏🏻