The last couple weeks have entailed trying to set up some new routines around Gabriel’s G-tube and feeding. We have a whole new set of medical equipment-bags, syringes, pump, hangar, etc, etc.
We got the pump for over night feedings for G a couple weeks ago. We jumped all of the insurance hoops and supposedly had “approval” for it to be covered.
Then the day it got delivered the rep explained that insurance may or may not be covering it. Super GRRRRRR! So for now we have it! If insurance doesn’t cover it we will have to decide if we want to pay out of pocket for the machine rental and bags or quit the treatment (which would be several hundred $ a month). We are documenting everything and plan to FIGHT to keep it! The whole diagnosis and point of the G-tube was for him to have overnight feeding.
Now the good news. Gabriel’s energy levels, attention, and ability to communicate improved immediately when we started doing the overnight feeds. We are still learning how to use the pump correctly. One night it just didn’t work correctly. G was noticeably more irritable and less communicative the next day.
When I say communicative I am referring to his ability to articulate what he wants, what he is feeling, and participate in conversation. These last couple weeks have been so enjoyable as his parent. He is able to follow directions. He is loving to play and giggle. He loves to do things that get Chuck or I playing or laughing with him.
I don’t dread taking him the grocery store with me! He can actually help a little bit and we talk about the foods he wants to get, etc. In the past grocery shopping was sooo hard. He would melt down multiple times every trip. Run spontaneously through the store ripping things off the shelves. In contrast, now that he is able to communicate he can tell me what he wants and we can go get it!
We went to local amusement park last weekend and we all had so much fun! He was able to stand in line and wait his turn! (well like a normal preschooler) He and his cousin made up silly inside jokes about their favorite rides.
He seems happier too. He is humming and singing to himself almost all the time.
It feels like several of the recent steps have been significant in unlocking his ability to participate in the world. As I am watching him come more and more into himself I understand why he spent so much time emotional and frustrated. I feel like the ADD meds got his brain to slow down enough to process (receptive communication) and now the nutrition is giving his body and brain the ability to participate in the world.
Exciting and heartbreaking all at once! I am so proud of how well this kid handles all the insane things he has had to endure. For now we are celebrating that things are going well!