Day 146 - Failed Hearing Test, GI stop by, and RSV

Tuesday, May 25th, 2021

Typical busy Tuesday!

8:00am: 🍼 For the 2nd time too much of Mom's frozen breastmilk from January wasn't used in time and it will expire before we can use it! For anyone that has pumped you know how frustrating this is! Now Mom needs to overcommunicate to the RNs to use the January milk thawed from the milk room and not the May milk put aside in the brown paper bags marked to take home. 🤦🏻‍♀️

8:30am Blood gas: C02 was 73.5 Unfortunately another heel stick that got blood everywhere. Thank goodness for hydrogen peroxide for our blankets!

9:00am Hands on and then Physical Therapy stopped by to stretch James arms and legs. They are working with the left side of his body to help him become less stiff and more flexible. He currently has a flat spot on the back right side of the his head so he is more inclined to turn his head to the right and not the left. We need to fix this as soon as possible so that it doesn't become a bigger issue later. Has anyone had a baby with Torticollis? Let us know if you have suggestions! 😊

10:00am Doctor change: Today we have what we like to call our Primary Doctor. She has had James the most and always stops in to see him even when she doesn't have him. She is really clear with next steps moving forward. We discussed the latest and asked about James getting a hearing test done so we can check off a box! ✅ Next steps is that we need to wean James on his ventilator settings and get his 13 PEEP down. James also needs to have a week where he stays pretty consistent and doesn't get bagged or have episodes into the 40s and 20s. 🤞

10:15am NICU Manager stopping by to discuss current steps and possibly going to the PICU.

10:30am Attempting to pump!

10:40am Had to stop pumping! GI Surgeon came by to discuss what options James has for the G-tube button. We are wanting the MiniOne Non Balloon Option and they only have a Non-Balloon option that has a permanent Gtube sticking out (not a button). So we need to order this!

11:00am Social Worker stopping by to discuss going to the PICU.

11:30am Hearing Exam (bad experience) - First off this person seemed very inexperienced to be working anywhere in a hospital. She immediately ask if James was getting discharged soon. Mom let her know that he is not getting discharged soon but he is 5 months old. This technician did not understand what that meant so she repeated herself and saying that "babies have a better chance in passing the test when they are closer to discharge". 🤔 She did the test and then at the end happily said, "Yeah he didn't pass! He does not have enough brainwave activity". Don't you think there should be a different choice of words? I let her know that's really odd considering that he responds to our voices all the time and even PT has commented on how responsive he is to our voices. The tech let Mom know that he can have this redone one more time before going outpatient. And that it would probably be better when he's closer to discharge. Lol Yeah, like when he's 1 years old?! 🤯

11:35am The doctor let Mom know she was going to contact the NICU manager to order the Non-Balloon option. Not sure why GI couldn't do this. But at least it's not on Mom's plate, thanks to our doctor. The doctor also advised Mom that since the PICU is having a surge of RSV cases James should get that vaccine before he goes over. We are looking into those numbers!

11:45am Attempting to finish pumping!

12:00pm NICU manager confirming with Mom what to order for the g-tube.

12:15pm Mom finally eating and showering. Lol

2:30pm Successful Trach Tie change with Dad and Mom; supervised by our RT and RN. Dad brought to the hospital frozen BM from January and brought home the milk that was just pumped this morning, including the expired milk. We will have to use that for a milk bath.

3:45pm Pumping again

4:20pm Oral stimulation with breastmilk on the pacifier

4:40pm Since James was awake we went ahead and did his RSV vaccine while Mom gave James taste of milk on the pacifier. Well it's not really a vaccine it's called, SYNAGIS. It's a prescription medication used to prevent serious lung disease caused by respiratory syncytial virus (RSV). Even if James was not going over to the PICU he was still need to have this before getting discharged.

5:00pm Finish washing pump parts

5:25pm Awake time on Mom's lap. Although James wanted to sleep. He ended up throwing up his formula bolus feed that started at 5pm (NeoSure 22). Don't worry Mom caught the puke in her hand. Not the first time! Lol

6:30pm Mom with assistance from the RN changed Jimmy's outfit. 

6:45pm BPD episode, desating into the 50s

7:00pm Shift Change! 

Overall a good night with sleep! There were moments when James needed everyone in the room including Mom, the RT, and the RN. We talked to him, fanned him with a diaper, and held his hand until he fell asleep. The only thing we didn't do was feed him grapes!

Randomly the hospital started to run out of items including wipes, diapers, split gauze, etc! Our nurse had a connection with someone in the PICU and was able to score us some diapers. Don't know if the low supplies has anything to do with covid but Starbucks is also running low on everything.

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