Day 194 - Feeding the Bed, Blood Draw, & 2nd Trilogy Trial

Monday, July 12th, 2021

Weigh-in: 6320 grams (13lb 14.9oz) - James now weighs more than Tommy! Well let's hope so, Aunt Robin has been feeding Tommy some gourmet meals!

Measurements: We will ask the nurse tomorrow to get measurements.

At 5am Mom woke up to alarms to suction and change James' diaper. She noticed his sock was off and when she went to put it back on that it was damp. Feeling around she saw that we "fed the bed", which means his med port was open and his feed was being pumped directly onto his bed. This is the 3rd time this has happened since being in the PICU. This also means he did not get breastmilk or any medication during that time period. The nurse thought she may have been in the room around 3:30am to change his diaper. Well his feed runs at 40ml/hour so to calculate we know we definitely lost 60 mls of breastmilk being pumped directly onto the bed. Also there were chunks of breast milk and bile on the blankets. This means James was also pushing back on his G-tube and emptying his stomach contents as well the port was open. Who knows how much total food and meds were actually lost! Very frustrating. This G-Tube extension should be replaced weekly but for some reason they are hard to come by. The med port had been overstretched from weeks of heavy use.

This week we have a new Doctor, who has poor bedside manner. This is also the consensus from other parents who have been inpatient here as well as several hospital staff. We are hearing a lot of..."that's how the PICU does it" and "that's the way we've always done it". Explaining WHY is super helpful for Mom. Mom does not want her baby being stuck with needles unnecessarily, or being overmedicated, or feel like she doesn't know why procedure is being done.

So this morning they decided to perform a Venipuncture on James today versus a heel stick for his labs. In order to do this they need to use the ultrasound machine to draw blood from his vein and fill up an entire syringe. As you know James is a hard stick, because he was a micro preemie a lot of his veins have branched out. So this seemed really unnecessary since the NICU for the last 6 months has been doing heel sticks not only for blood gases but for labs as well. After the blood was taken it seemed as though they were not rushing to get it tested like we have previously seen in the NICU. Later in the evening mom overheard during rounds that the blood had clotted and the labs were inaccurate. Wow. All of that for nothing.

Mom spoke with Pulmonologist and felt better about our plan moving forward. He approved a Trilogy trial at 3:00pm since James has had a few stable days in a row without too many withdrawal symptoms.

Trilogy trial at 3pm. Overall James lasted 7 minutes. This was not good. It was an informative trial to let us know that he is not yet ready for the trilogy. 

Notes from Doctor:

He is on same vent settings with PEEP 12, TV 60 and rate of 25, 30% oxygen. After discussion with Pulmonologist, we will trial Trilogy Ventilator using PC mode. He was initially placed on rate of 30 PS of 25 , Peak pressure of 26/12. He became tachypneic to 50-60s,and was sweaty. Peak pressure increased to 30 and with that TV were 60. over a short period of time end tidal Co2 increased to 70s -80s eventually 90. We stopped trial after 7 minutes. Both Mother and Father at the bedside during trial. He was placed back on PRVC mode with same settings.

After the trilogy trial mom was able to go home to shower while Dad assisted with a bath and Trach care. James is pretty wiped out from trying so hard on the other ventilator and slept the rest of the afternoon into the evening.

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