Day 213 - More Wasted Breastmilk, Inconsolable, & Vent Disconnected

Saturday, July 31st, 2021

What the setup is like to hold your baby.

Last night ended up giving him a glycerin and a Tylenol. At evening rounds the doctor was pretty certain that the ventilator was not irritating him but it was the gas built up in his belly. However the nurses thought he was struggling with the ventilator. Overall we're all just guessing. James seemed pretty agitated towards the end of the night last night. He did his trial from 9:00am to 9:00pm. The Tylenol was given around 9:00pm so it was hard to tell if the medication had helped or if it was putting him back on the servo. This situation repeats itself tonight. 

Kind of a stressful night in fact that Mom had to get up with every single alarm, anytime James made a sound, and to make sure we stayed on top of suctioning. We think that a lot of the nurses here just figure that since Mom is here she needs the practice of being a full-time nurse so they do not jump in and assist. The thing is it will not be helpful to start off our journey at home with Mom on zero hours of sleep. James had a good rest from 10pm until 1am, then needed suctioning, diaper change, and venting at 4am, 5:45am, 6am, 6:15am, 6:45am... And then shift change and the day begins! Mom got about 4 hours in there, not continuous. Unfortunately when James is sleeping that is the time she gets to shower (down the hall in the public restroom - photo below), use the restroom, eat, update the blog, pump, wash pump parts, do laundry, etc. 

Yeah that shower curtain definitely doesn't work!

About 100ml of breastmilk wasted again because our night nurse over thawed. She just dumped in a 120ml bottle at 7am. We only needed 2 hours worth of feed which is 80ml. Instead she threw in 120ml bottle on top of there being like 60ml in there. Mom is super pissed this is the second time that a large amount is just discarded. She has found that unless the RN has children and has breastfed they just don't get it and aren't treating the milk like liquid gold. Breastmilk isn't free...Mom's sacrifice a lot of their time, their sleep, their bodies, their mental health. And on a completely separate note, exclusively pumping is very expensive.

James continued his rough day from the day before into the morning. He vomited early around 9am. Mom did a wipe down bath along with the trach tie change. He had strong retractions and high respiratory rate. Our new GI Doctor said that a high respiratory rate can cause the throwing up and he recommends getting off the lactulose because it causes gas and to change to milk of magnesia. Mom told him that she is just really sick of changing meds all the time and not sticking with something more than 48 hours. She let him know that his colleague recommended lactulose and seems like everyone contradicts each other. 

Mom worked with James doing his physical therapy stretches, trying to do tummy time, and had him sitting up in his boppy. James is getting more and more control over his head.

At 1pm, James was really inconsolable.  We were about to give him a Motrin but finally a giant air bubble came through the syringe while venting and he relaxed. We still gave him a glycerine and he immediately had a bowel movement into the nurses hand while inserting the glycerine. He calmed down. We think the key is he needs to have a bowel movement once a day. Instead of doing PRN Morphine or PRN Tylenol, we need to be doing glycerins to empty his bowels so that his stomach can relax. This will also help his reflux and vomiting.

Dad visited in the afternoon. He experienced 3 hours of what mom had been dealing with for two days.

Mom got setup to hold James in the chair but that didn't last very long. He was so strong Mom was afraid that he was going to squirm out of her lap. It lasted like 5 minutes. 

Setup to hold

We ended up giving him morphine at 9pm. But also at 9pm we switched him back to the Servo. Immediately he was fine. There's no way the morphine kicked in that fast. So the RT and Mom really think that it was the ventilator. It would also explain why he did the same thing yesterday at the same time. 

10:30pm James just lifted his arms and disconnected his oxygen. Mom immediately heard (shhhhhh) and jumped out of the chair so fast to see what had happened and to reconnect. The only alarm was the normal peak alarm, which goes off all the time. Mom was so shaken up she went to tell our nurse sitting at the desk just so she understands that if the vent ever gets disconnected there is no special sound. It's the same fucking alarm that goes off all the time. The RN came in to look at it, didn't know what she was doing, pulling on tubing then the vent changed to all zeros. Mom knows this is really bad because she experienced this in the NICU; it means James is not getting oxygen, it's disconnected but we couldn't see where. We screamed for an RT and said somebody needs to come right now of course it took a while to get somebody. While we're waiting for an RT to show up for an emergency, we're trying to find out what is disconnected and we see she had pulled the filter from the ventilator disconnecting his oxygen for the second time in 5 minutes. 

Thank god Mom wasn't in the bathroom. This is why ventilator dependent babies need eyes on them 24/7 with no breaks. James doesn't go down slowly, by the time his O2 registers on the monitor he would be in the single digits. Mom let them know that it really sucks that if the vent gets disconnected by the time someone responses and comes in the room he will need to get bagged.

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