Normally we would weight and do measurements on Monday morning but all of that was done on Sunday due to the surgery being scheduled for 11am. Below are the new numbers:
Weight: 5950 grams (13lb 1oz)
Head Circumference: 15.84 inches
Length: 21.06 inches
5:45am UPDATE: The morning started off at 2am with trying to get an IV with no success. We tried for 3 straight hours. Eight tries between 4 folks who tried on the hands, wrists, feet, scalp, and arms. 😢 This is even with a PRN morphine dose. Mom held his pacifier while he wrapped his little hand around her finger. Sometimes we had 3 people holding him down, sometimes only 2. Two is not enough; Mom thought we already learned this lesson the last several times!
Now we are waiting on the PICU PICC team to get here at 7am so that the NICU PICC team can borrow their ultrasound machine. James' feed stopped at 3am, so they wanted to get his IV in at 3am to start TPN and lipids. However since he is "older" they are not concerned with low blood sugar. Worst case if they still can't get an IV with the ultrasound machine then they will have to get anesthesia to sedate him first.
Mom and Dad will go across the street and wait in the waiting room during the surgery.
We will update as the day progresses...
7:30am Update:The PICU PICC team came over around 6:30am to attempt 2 IVs with the ultrasound machine. After 1 try in the right forearm, she got a successful IV in the left upper arm! So 10 tries between 5 people. So hard to watch! We still only have 1 IV and we need 2 for surgery. At this point we may be relying on anesthesia to put in the 2nd one in the Operating Room.
The issue with his veins is that once a baby is poked so many times their veins start to branch out and stop going straight (missing the technical jargon). This can correct itself over time.
10:30am Update: Just waiting to head over to the PICU. Surgery is scheduled for 11am. James has his IV fluids connected with lipids and TPN.
11:00am Update: On our way... James received intranasal versed, which is an anti-anxiety med, to help calm his nerves. It didn't take long for him to pass out for the transport over. Anyone know where Mom can find Versed? Lol
11:40am Update: They took James back to the OR. We signed consents and spoke with the Surgeon and Anesthesiologist. They are going to do a caudal epidural nerve block. They may not do the 2nd IV.
1:00pm Update: They called with an update saying that they placed the new G-tube button and they are finishing up the hernia. May be another hour until finished.
2:00pm Update: GI surgeon met us in the waiting room. Everything went fine. All procedures were successful. Anesthesia ended up placing a 2nd IV in his right ankle.
3:00pm Update: Back in the NICU and all hooked back up. Transporting a vent dependent baby is scary! James is still feeling the anesthesia and pain meds. He seems good. James definitely has a lot going on down there in terms of bandages so changing his diaper right now is a whole ordeal. G-tube site looks good with the new MiniONE button. We are starting feeds at half (so 60 ml). Will eventually stop TPN and Lipids if he can tolerate feeds.
Post recovery photos
Thank you for all of your love and prayers as we continue on this journey. ❤️🤗❤️
Evening Update: Mom and James took a much needed early evening nap, since they had only slept 1.5 hours the night before. Now just waiting for shift change to see who it will be! 🎲
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
Yesterday was James's first full day of Pre-K! For the past 2 months, James has only been able to do half days because of nap time; he required oxygen while sleeping. The great news is that James is now officially off oxygen completely! Also, we have worked with our GI team and the school nurses for them to be able to administer G-tube feeds at school, so he can stay a full day! It's so important to take the time to celebrate the wins because with a medically complex kid, there is always something to be working on! 👍🏻 From ventilator weaning to stopping the ventilator completely, to scheduling decannulation, to getting the trach stoma closed, to graduating from a GJ to a G-tube, to getting off of oxygen... It feels never-ending! That is just the medical side of it. There are also those normal things like walking, talking, eating... James has done great with those as well and cognitively he is acing everything! I recently saw a post from John Israel talking about perpetual dis...
Today was Day 7 out of 15 of James' Intensive PT/OT at Wolfson's! Taking his first independent steps! 😭😭😭 Thank you everyone for the love and support! This summer has been INTENSE between learning how to walk and weaning off the feeding tube! Huge progress though!
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