Day 214 - Daily Changes to GI Plan of Care
Sunday, August 1st, 2021
It's August?!? Here we are, James is 7 months old.
Mom loves when the night nurses comment about how "he was so good last night and that he didn't wake up at all". 🙄 Are you not charting the pile of diapers laid out for you on the scale? Mom let her know that is very inaccurate, Mom got up every single time to every alarm, suctioning his trach, changing his diaper, venting his G-tube. She's like "oh well we're not supposed to be Hands-On at night". Really? Just let the vent alarm? We asked for them to be hands off at night which meant no unnecessary blood work, no x-rays, no blood pressures, no temperatures from like 10pm until 6am. No reason to wake up James who were trying to get on a good sleeping schedule!
James vomited at 6:30am, right before shift change. The nurse says, "He almost made it the whole night without me having to come in the room". Oh boy! James woke up at 1am, 4am, 5:15am, 5:45am, 6am, 6:30am. A buddy nurse nextdoor stopped in more than our RN. She decided it would be more convenient for her to do all of his 5:00am meds and 6:00am meds at the same time at 5:30am. Well James vomited. That really throws off the schedule for the rest of the day.
We also wasted a ton of breast milk again! At 6am she filled the bag with 200mls of milk. With only 3 hours left, we only need 120mls. But because James vomited at 6:30 we pause the feed. Mom was going to resume his feed from 8:00 to 9:00 am, but he was so gaggy that she ended up just stopping the feed and venting him with a syringe until James calm down. So instead of just wasting 80mls we threw out a good 200mls.
Mom did trach care and wiped James down with the Day shift nurse. We also had to change all of the bedding. He has been yawning every 15 minutes.
Mom spoke with GI and suggested to decrease the amount of mLs and fortify for the extra calories. He agreed so are going to do 35ml/hour overnight instead of 40ml/hour fortifying all the breastmilk with Similac formula to increase the number of calories per ounce to 22. Fortifying breast milk is the first-line treatment for increasing calories in babies. This allows the baby to still receive all the benefits of breast milk plus additional nutrients, as opposed to the exclusive use of formula first. This should also help with reflux to thicken the feed (but it will empty from the stomach slower).
Mom noticed his G-tube site was really red and raw on one side probably from pulling from the Grip-Lok (stabilizer). We have not found anything that works for stabilizing the G-tube. Mom is in a lot of different Facebook groups one specifically for G-tubes and a lot of people have the same issue. We are currently looking into the possibility of trying an AMT Cinch. More likely than not insurance would not cover this and we would pay out of pocket. They run about $15 a piece and some people say they don't last that long. If they last 2 weeks then that would work, but two days? Well we'll have to figure out some hack with tape instead. Mom is going to ask in some of the Facebook groups if we can get one to try before purchasing from the company directly.
Dad came to the hospital for 3 hours to relieve Mom, so she could go home to shower. During this time the doctor came by for a bedside report. They ordered an the X-ray and it showed lots of gas in his intestines. Hopefully stopping lactolose will remove that. James had his first bowel movement in the PICU (a month) on his own without a stimulant. They also increased the cuff to just under 2ml the balloon only had 1.1ml in it.
6:00pm: We switched James over to the servo because he was completely inconsolable and he immediately was relieved. The goal was to go until 9:00pm.
Same night nurse third night in a row, please pray for Mom. Why can't we have consistency with our preferred nurses?
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
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