Day 97 - 1st Trach Change & Back in the NICU 🧳

Tuesday, April 6th, 2021

What day is it? 🤣😩😪

Before the trach change

Morning Update: First trach change happened around 12:15pm. It went well and the doctor said his stoma looked good. A whole slew of people came to watch although at first it was hard to find a single RT. Then all of sudden the room was full. Interesting how we have such strict rules around covid but then allow several people to be in a patient's room just to watch a procedure. 

First withdrawal episode 🤔: He was taken off of the paralytic, sedation, and pain med immediately after the trach change and then put on methadone and clonidine for pain. Immediately he threw up, brayded, desated, and was angry. Mom had to go out in the hallway and call for help. She was told "he is fine". Since he never throws up she felt like these were withdrawal symptoms already, but was told it was too early. Interestingly enough they decided to start him back on morphine (pain) and dexmedetomidine (sedation) right after this to have a more gradual approach...

On Jimmy's transport back to the NICU 🚂 we monitored his stats and increased his oxygen as needed. As we walked through the NICU, we were greeted by familiar faces and had people join us in our walk back to our original room (our very 1st room the night James was admitted). 

When he arrived back in the room it was a little chaotic with getting him readmitted, initial assessments, transferring frozen and fresh milk, another MRSA nasal swab, and redoing all of his ID #s. The NP and Doctor took a look at him and decided that we needed to do a blood transfusion🩸. James was very anemic. This was something that Mom had noticed last week in the PICU when reviewing his CBC panel (HCT was at 27) and had even brought it up to our RN. She had a stated that his hemoglobin level was decent enough not to get a blood transfusion at that time. Well today his HCT was at 21.7 and HGB at 7.3! 25 and 7 is the lowest they should ever be. They also weighed him and it looks like he gained weight this past week. His last weigh in was on 3/30 at 3170g (6lb 15 oz) and today at 3350g (7lb 6oz). James has never had any trouble gaining weight, even on diuretics and a low calorie diet. This is great since that is typically an issue BPD babies have.

The goal is to get James off of the IVs and to move his medicines to his G-tube. The doctor decided to remove the sedation and increase his morphine. The overall end goal is to get James off the morphine but we need to do this slowly. He also wanted to increase his feeds to 16mls.

Mom then had to walk down the street and back across to the Children's Hospital parking garage to move the car. ☀️🥵🏨🚸🧳🏥

"It's Always Sunny in Tampa Florida"

Evening Update: James threw up again. He is also having short spasms where he turns bright red and frightens himself, looks as almost as if he was kicked in stomach. His bottom lip also shivers as if he is cold. 😢

After Jimmy's blood transfusion the PICC line didn't flush, it just stopped going through. A Charge Nurse from the PICC team saved the day. She did a round of several little pumps and then pushed heparin through which is a blood thinner. She also flushed all four of the lines from the PICC line. James should be able to get that removed soon, now that all of his meds are going to his G-tube. This is good since having an open PICC line also has a large risk of infection with having a direct line to his heart.

After evening rounds the doctor decided to take James off of the 2nd diuretic and change his main one to diurell. From what we've heard and seen so far we know that the PICU encourages diuretics for BPD babies whereas the NICU doesn't like to use them (definitely differences between the NICU and PICU). Everything online says it helps BPD, so Mom needs to do some more research on the pros and cons of diuretics. These Trach Mommies FB Groups help a ton too! Now only if there was one for BPD, and no not Bipolar Disorder! 

2am Update: James is restless, desating, and making his PEAK alarm go off in the 50's. 😬 Doesn't seem like the morphine and clonidine are handling his pain. His cries are silent. 😥

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com