Monday, November 13, 2017

Here we go!

We finally have the green-light for the first step of weaning from the tube at night!

Jax had his GI/Nutrition follow-up at Childrens last week and I wanted to ask for a trial without the pump to see how Jax would do (the pump is the machine that Jax is hooked up to at night while he sleeps that feeds him). I knew in my heart that I would not be granted permission given his current weight (52 lbs), but I certainly expressed my yearning to try something. I thought of this when we were up in Green Bay staying at my mom's house a few weeks ago. I put Jax on the pump and forgot to take the clamp off. The machine didn't stop and alarm, but rather blew the extension right off and fed the bed all night instead of Jax.
In the morning, he was hungry! He ate two pancakes! So I thought that maybe he is ready to start taking all his food by mouth now, but we're making him so un-hungry each day with being fed all night. Possible?

The doctor and dietician agreed, although with him still being so thin, and growing taller each day, his BMI wouldn't allow us to just take out so many calories each day. So, we made a game plan to try. We cut his nightly tube-feeding in HALF, which may not seem like a big deal, but to us, it's HUGE. It allows us to do a few things:

1. Jax is only on the pump now for 2 hours, so I remove it before I go to bed. This lets him wake up not connected to a machine each day - freedom!
2. Jax can start working on overnight potty training now. While it's tough that he'll be fed for 2 hours while sleeping, which will make him most likely have to pee, he at least can work on getting UP to use the bathroom. Have you ever potty trained a toddler by filling their stomachs with liquid and then going to bed?? :) Crazy train for one please!
3. He can possibly be HUNGRIER now to eat his calories that he didn't get overnight.

We have to increase the potency of his protein drink (less water, more powder) and also change the way he drinks it at school. Snack and lunch and no in between!
I have to weigh him every few days at home to be sure he's maintaining and then starting to gain, and he also has to have an official weight check on record in 2 months at the hospital to stay on top of his weight/health while we do this.

This is one area of parenting a child like Jax that a lot of people don't understand. We, Jason and I, aren't allowed to make these judgement calls ourselves. It's hard wanting to try different things, but knowing that we need clearance from the hospital to do it. If I just cut his tube-feedings in half to try it and for some reason, he got sick, or lost a bunch of weight, we would be held liable for not providing his medical needs.
It's a line we have to walk as parents to get things cleared and wanting to push things forward. Everything we do is for Jax to live the best quality of life he can, but we have a team of people that all have to agree before any moves are made. Sometimes, it's hard to sit and wait for an appointment and then to feel like you're asking permission, and then to know that the trial is totally on your shoulders to 'work'.
We've been having a ton of talks with Jax so he can take some personal responsibility and to know what's on the line. I find myself stressing with each meal, and reading every single label for maximum calories at the store.

The plan in my head, is that we crush our goal with this half feed, and then the docs let us cut that in half (that would be about 6 months from now), and then if he could crush that goal (6 months from then), then maybe... they'd let us try no tube. Jax has to go one full year without ever using his tube - even through sickness, in order for it to be removed. So, you see, if Jax starts phase 1 right now... he has a chance to live tube-free in 2 yrs if it's seamless. It's a process, and I've always known that. I explained it to Jax yesterday that there's a long-process that he's literally just begun.

I know there will be set backs, so I try to not get my hopes up too high, but I just keep thinking - age 12. I'd love for him to get it out before his official 'teen-years'. I don't know why, other than I'd love for him to worry about totally normal teenage stuff and not this.

So here we go... and we are 4 days into and so far, he's crushed it :) Turns out he loves 260 calorie kid-cocoas from Starbucks...


This kid took school re-take photos without us knowing!

Ouch... the teams mix up for the next tournament, so there's hope :)

Fun night to a comedy show and dinner with the Niagra crew!

Slowly but surely, coming along.

The official sink cleaner for toothpaste. After walking in and finding Jax cleaning the sink with his own toothbrush ::SHUTTER::::

Afternoon with Jax running errands, yes he walked around like this

I 'caught' him making a phone call to Santa (MELT!). I guess this phone has Santa speaking in it.

I'm going to really soak up this year's Santa with them... 

Apparently you can't heat milk up in a tea kettle....

Trick or Treat!
First buck with his bow. The boys go up with Jay next week and will sit in the stand for the first time one afternoon to get a taste of it! Hunter-safety next year already, wowza!


Macchiatto said...

This update is so awesome. Thank you for explaining all the considerations so we have a better appreciation of what you and other tubie parents are dealing with. Praying for you all. Glad he is off to a good start and I love all the pics!

Matt & Shana said...

Loving the update and your positivity!! We are all cheering your family on from afar :) HUGS!!!