Day 197 - More Vomiting & More Meds

Thursday, July 15th, 2021

Starting off needing to vent about the miscommunication in the PICU...

Clinical Notes for the day:

James presents to the pediatric ICU with a history of feeding intolerance requiring G-tube feeds. Feeds paused due to intermittent emesis- which initially resolved. Emesis resumed and GI was consulted. They recommended running feeds over a slower rate but parents did not want that. He is currently tolerating goal GT feeds: 20 mL Prune Juice BID (11A and 4P) +Bolus feeds 120ml over 45mins: NeoSure 22kcal at 8am, 4pm, and EBM at 12pm +Continuous feeds EBM 40ml/hr 6pm -6am. He is intermittently constipated for which milk of mag and miralax was started. He went 48+ hour without a bowel movement. Mom did not want glycerin suppositories used but after extensive time without BM she was ok with a mineral oil enema. He stooled well post enema on 7/15/2021.

Please note that both sentences are red and completely made up. 1) We were told that the PICU team did not agree with GI's recommendations. We did not make this decision. 2) Mom never said to NOT use a glycerin and never suggested an enema. 

This is getting ridiculous... the miscommunication and game of telephone every time report is given seems like there are just too many cooks in the kitchen here. Who writes these notes?  

Okay now to what happened today...

Mom went to bed around 1am after pumping and washing bottles. James woke up at 5am right on schedule. Heart rate went from 100 to 180. Mom suctioned and let the nurse change the diaper as she went to use the restroom down the hall outside of the PICU. Came back to a soaked bed where the nurse didn't have his penis covered. The nurse also says, "Mom, I'll pick him up and hold him if you can change the bed" 🤔

Just after 9am, Mom woke up after a short nap to alarms and found James laying in his throw up. Unfortunately she could not find a nurse. Assuming that he vomited sometime in between 8:30am - 9:00am but the nurse just probably didn't notice when she gave him his meds at 9:00am. This morning miralax was put in his 8am feed then at 9am he was given other medication in which the Farrell bag was clamped. At 9:20am, he projectile vomited again. Mom wiped him down, changed his diaper, changed the bedding, did trach care. 

Then PT/OT worked with James teaching him how to roll over and doing yoga stretches with him. During PT, GI came around and tried to stimulate James by sticking her finger up there (and be also got poop on the bed). Then our Discharge Coordinator came in also during PT with a list of staffing agencies that are not covered by Cigna but just in case I wanted to call them. Then the Doctor  came in right when PT was over. 

Changes suggested from GI: 

• not putting in a bumper under his legs when he's getting fed (that is pushing up on his stomach)
• not putting in meds in his 8am feed
• not clamping the Farrell bag after his 8am feed

In the evening the PICU team ended up giving James a mineral oil enema. We were able to get a sample for a fecal occult blood test which was  recommended by GI. The result was negative.

Micro Rapid Testing Stool Occult Blood: Negative (07/15 21:21)

Couldn't get the trach clean between the hard plastic and the rubber.

After a nurse told Mom she shouldn't try to take it apart. The Moms of Trach Babies Facebook group had the answer! And then Mom also found a YouTube video. Much better than having black mold in the trach!

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these emails to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com