Day 215 - X-rays, Echo, & Music Therapy

Monday, August 2nd, 2021

Weight : 7140 grams (15lb 11oz)

Height: 22.5 inches

Couple of upsetting things overnight:

• Alarms going off and nurse is not coming in to check on him
• We wasted a ton more breast milk again I just dumping full bottles into the feed bag without measuring. At one point there was 8 hours worth of milk in the bag. Breastmilk isn't supposed to be out more than 4 hours.
• Trying to do x-rays in the middle of the night even though mom has already communicated that James is a hands off during the night. He actually text said "oh yeah I said the order says 8:00 a.m." 🤦🏻‍♀️

We had a new nurse today, new to us and new to nursing. She was nice.

So James ended up getting an x-ray of both wrist and his lungs during Day Shift.

Wrist x-ray results: 

FINDINGS: 
Zone of provisional calcification in the distal ulna and radius is less well-defined than 1 months ago and distal radial ulnar metaphysis appears slightly frayed. No cupping or fracture. Slight deformity of the distal radial metaphysis suspect sequela of healed prior trauma.

Then James threw up around 8:40am after this nurse used the suction toothbrush, he gagged, and then vomited. Mom did a really brief wipe down for a bath since he was going to have an echo. There was no point in bathing him prior when the ultrasound jelly gets everywhere.

Then this nurse suctioned him to Blue which is past 12 and is too far. Mom let her know that she went too far and she said "oh, well the paper says 12". Mom just told her double green to be safe, since we  don't have time to argue colors and numbers. James was really upset after this probably because the catheter hit his carina.

GI stopped by and essentially made a bunch of suggestions that later on nutrition would stop by and disagree with.

Doctor did rounds. Mom brought up the concerns about the wasted breastmilk and how they just like to dump and not measure. The Charge Nurse was in the room so she said she would handle. They are going to go back to using syringes instead of bags for the feed. This way no breastmilk is wasted and James gets the entire fat content.

James went on the LTV at 10:10am started him on 70 tidal volume, immediately hated it. Screaming bloody murder. Then we calmed him down for the echo. Mom vented him, while the nurse held pacifier. The results of the echo came back good. They are looking for pulmonary hypertension which most BPD babies end up getting. 

Afterwards he became very upset again, not a BPD episode but just screaming like a baby without a trach. The RT went to go get the doctor to show him, but by the time he came in to see him again he was completely calm. So we look like liars. He said if it happens again we should change to Pressure Control mode over Volume mode which is what he is on now.

Music Therapy and Massage Therapy stopped by for an hour and James loved it. Mom played his lullaby for them. The guitarist said she would help Dad learn the chords for his song.

Nutrition stopped by and suggested that we don't follow GI's suggestions, which was that she wanted us to change to a formula that was low carbohydrate high protein that just came onto the market. GI was also concerned about the calorie count. But nutrition was like we just reviewed the calorie count.... Too many cooks in the kitchen.

Today we officially changed the feeds to syringes only. No feed bags, no farrell bags. This way no more breast milk is wasted, and he is getting the fat from Mom's milk, and each syringe lasts about 2 hours before the alarm goes off. The feeding schedule is continuous fees from 6:00 p.m. until 9:00 a.m. 35 ml/hour and two bolus feeds at 12:00 p.m. and 4:00 p.m. 120ml/45 minutes.

Dad came to visit in the evening to relieve mom so she could go get a massage. Mom ended up falling asleep on the table and waking herself up to herself snoring because she has sleep apnea and isn't getting very much sleep.

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