Day 396 - Jamesy's First Real Outing! The ZOO! 🦎🦧🐊🐅🦥🐠🐟

Sunday, January 30th, 2022

First thing's first, forgot to update on Friday our pediatrician called to let us know that we could wean James' sodium chloride. She discussed with the endocrinologist and because of his labs they made the decision to wean from 4ml 2x/day to 2ml 2x/day. He was within range but on the high end. They would like us to repeat labs and 7 to 10 days. 💉 This is great news! 📰

We called the Aquarium and found out that it's only the 1st Sunday of the month! So we decided to go to the Lowry Park Zoo instead. Once you pay you're allowed to go the rest of the year for free, so Dad's plan is to do this every weekend. 😂

Mom made strawberry and banana pancakes 🥞 and sausage for breakfast while Dad did some morning eye patch and bouncer time with James. Grandpa Don also had a morning Facetime with James. 🤳 

Side note: James had recently been pulling at his GTube. He is super fast and strong. We have to keep our eye on him 24/7. The other night he tried to stick his finger into his stoma and scratched himself so much near the G-tube he drew blood. It's like it itches him more than it hurts that his skin is raw. 😢

We live right near the zoo; however, it took us an hour from packing up equipment to walking in. Why? Because every alarm in the world was going off as soon as we unpacked in the parking lot zoo. 🚨 Three different machines wouldn't stop beeping at us. We couldn't figure out the issue! Suctioned him and readjusted the circuit and trach to stop the ventilator alarm, repositioned his pulse ox and eventually replaced the probe and sticker for the pulse ox alarm, restarted his feeding pump for the infinity alarm. Goodness! We feel very comfortable with his equipment but it was sure embarrassing to look like hot messes with their trached ventilator kiddo. People probably thinking 🤷🏻‍♀️ "Why are they even bothering if with such a high acuity situation" with us trying to silence all the alarms. Once we figured it out we were good.

James couldn't see much because of him being in the stroller. The railings were always right in front of his face. We did find the underground water section with fish, eels, and manatees and James was able to see and follow everything. We spent a lot of time down there. After that James seemed upset and at the same time Mom was getting worried about the battery on the ventilator. So we took a break at an "eatery" and found an outlet to charge the vent. Dad dragged a massive table that screeched across the floor to be closer to the outlet. Yes, we became those people. We took James out of the stroller and took turns holding him to eat. He was fine watching his Song for Littles. The ventilator charged a tiny bit (it takes like 8 hours to charge just 1 hour of use). It's the worse feature of the LTV, the battery life. The additional sprint battery packs don't hold their charge and drain even when not being used. So overall we typically only get about 3-4 hours of use. We changed James in the Family Public Restroom which was an ordeal, people knocking to get it not realizing what was going on behind the door. James passed out during his diaper change, probably because he got to lie down. We then realized his GTube had been leaking, there was blood and for some reason we had the wrong 4x4 gauze. We had woven instead of split gauze. 🤦🏻‍♀️ We cut a woven and it was a mess, shredding pieces everywhere. It was time to leave the zoo. James was asleep, the ventilator battery was dying, it was the coldest day of the year so far, and now we needed to get his GTube taken care of at home. ✌️

After this trip mom is now looking into a portable generator that would be able to power the ventilator. Now the question is... How much power do we need, how many watts are being used?

Fun Fact: You'd think it would be easy enough just to ask someone who already has the LTV ventilator. "How much power do I need for a generator?" Nope! The watts being used are determined by the ventilator settings and the age of the battery and machine. Different for everyone. You have to use a wattmeter. They didn't mention being a Trach parent also means being an Electrician.

You can see his 2 teeth here!

Tickling his own foot!

P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...