Day 114 - Going back to Bolus Feeds

Friday, April 23rd, 2021

Today James had several episodes, although his chart won't reflect that. Nurses only chart what they want or have time for. So today the chart will show as having only 2 episodes. 🙄 How do we know this? The Charge Nurse came into the room and asked the nurse, "How many episodes did he have today?". Her response was, "Two, well I charted two".

His actual BPD events start at 9am, then 12pm, 1pm, 3pm, and 6pm. This is how many times we needed to increase the PEEP to 14. This is how many times James had lung spasms bad enough and long enough to have several people come in the room to "help". Five is how many BPD episodes James had today, during day shift. It really is as simple as looking up the history log and seeing how many Bradys he had and when they occurred. Seems much more accurate than manually entering these in. It really blows our minds that tracking statistics isn't automated by now.

Mom held for 2 hours and then he went in the swing for 3 hours. We turned off the swing motion during his feeding. The nurse wanted to leave him in there for Night Shift to handle, which would have been at least 5.5 hours in the swing. Some nurses would just love to have James sleep in the same position all day if they could. That is not good for him, obviously. #AlwaysBeAdvocating 

Needless to say Mom is not looking forward to dealing with home nursing. 

At 3:00pm everyday we are supposed to do trach care and change the ties. That did not happen, so at 6:30pm Mom remembered and mentioned that needed to get done. Mom was told if she wanted it done we needed to hurry up. This is now another thing the parents need to advocate for? Good to know.

Changes:

We are changing his feed schedule to go back to bolus feeds at night instead of continuous. He was increased to 84ml 3x a day from 56ml 4x a day.

Mom found that in the "FB Group - Mom's of Trach Babies" there were several others with the same question. 

❓ Since we've started doing continuous feeds at night, my baby has been very gassy, why? ❓ 

Although all of us in the group are still trying to figure out exactly why continuous feeds are causing more problems but overall majority of the answers coming in from Moms are saying that the gut just needs a break. A lot doctors put babies on continuous feeds at night "to make it easier" for Moms, so they only have to change the feed pump every 4 hours. However all the Moms agreed that if their baby has horrible gas pains it's not making it any easier.

Update: James had another episode around 1am due to gas pains. Once he had a large bowel movement he went right to sleep. 

Okay, just for a little. Another episode at 2am and 4am. 

5:30am - Right now he just wants someone to hold his pacifier for him all through the night.