Day 187 - Withdrawal

Monday, July 5th, 2021

At 5am smiling in his sleep.

3:30am: A random RN practiced doing a heel stick on James. Blood was everywhere. She tried three different sticks and then ended up going into the hall and asking an RT how to do it. And he let her know she needed to take the cap off the stick. 🤯 The whole time she's just telling James, "you're fine" as he is crying and screaming. 😢 She never apologized. Mom asked why an RT wasn't doing this and she said they were all busy.  It was awful to watch.

4:30am: X-ray is here! WTF 😒 James is supposed to be sleep at night. The RN sent them away to come back later during Day shift.

Today was a slew of tests and people!

• X-ray of wrist to follow up on rickets
• Echo for the heart for pulmonary hypertension
• Bedside Report with Doctor and Team - discussed concerns with overmedicating, failed home vent trial, previous Doctors order from the NICU, and possible length of stay (which sounds like we could be here for another 6 months) 😢
• 3 people from OT and PT
• Social Worker
• Discharge Coordinator
• Pulmonologist - discussed home vent options
• Director of PICU - discussed changing up feeding schedule

We had therapists, social worker, and a discharge coordinator in the NICU but these were introductions from the PICU side. These are all new people! It has been really tough remembering everyone's name.

On another note...what's frustrating right now is that Mom knows James' history better than anyone else (except our old primary) and yet she is constantly being told she is incorrect on his history or Doctor's orders. Or saying that Dad doesn't understand when James is having an episode (?). A lot of these conversations happened within the first 48 hours of being here, yet Mom and Dad have been with James for 187 days. But hey we're not Doctors Physician Assistants... One person in particular in the PICU is always trying to make herself look good in front of the director or doctor by dismissing Mom, and "correcting" Mom's statements to the doctor in front of her. What's crazy is that ALL of this information can easily be looked up in his history. Mom and Dad also have access to this portal online. Very simple and easy to do.

As Mom was administering the meds this morning she noticed that he was getting his multivite through his G-tube. In the NICU this was always given in the evening and put in with the milk to help with the reflux. Mom thought that James probably would not tolerate this as a syringe through his G-tube. And...

During the visit from PT and OT James vomited 3 times. He then did the several more times throughout the day. Mom did trach ties twice due to him covering himself in throw up. Vomited probably like 6 times at least, Mom lost count. The last time was around 6:00pm. James was inconsolable so Mom was patting him on the back gently while he was sitting up and got him to burp quite a few times. After holding him on her lap for a few he randomly projectile vomited all over himself, Mom, and the chair (which is her bed).

Shortly after James had his first real withdrawal episode. Breathing almost 100 beats per minute, randomly became drenched in sweat, started doing repetitive motions with his hands. So we ended up giving him a PRN morphine. He then had a pretty good night! With an episodes at 3:30am-4:30am, 5:00am, and 5:30am. So Mom got her sleep from 12am-3:30am (3 ½ hours which is pretty good) and then from 5:30am to 6:30am (another 1½) and from 7:00am-8:00am (1 hour). So a total of 6 hours intermittently, each time needing to comfort James needing to be suctioned or diaper changed or both. This is actually the most sleep that Mom has had in a long time while in the ICU. 👌

Updates/Changes:

• We weaned his methadone from Q6 to Q8 which is a 25% decrease. Consequently he had a withdrawal episode.
• After so many spit ups and vomiting they decided to change the feeds from bolus to continuous during the day tomorrow. The first bolus would run over 3 hours, the second over 2 hours, and if everything is still fine the third over 45 minutes. 
• Mom also talked to the doctor about making sure that everything's done during day shift and not night shift. Whether it be blood gases IVs, x-rays, etc. He agreed it makes sense to get James on a good sleeping schedule.

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