Sunday, November 1, 2015

Plans are set

The boys have been super hyped up for Halloween week, which is tons of excitement. They had a Halloween parade and party at their school, which I hosted in Jax's classroom (and I'll do the Christmas one in Brady's). Thankfully, the boys are still at an age where they LOVE having me at school :)
On Thursday, we attended Jax's surgery consult with the same surgeon Jax had almost exactly 7 years ago at 4 months old. The doc said the prolapse was the worst he's seen, but he understood why we waited so long in hopes to just be done with the tube. He has such a great bedside manner and was very 'soft' with telling us that the GI-notes did indicate many years of tube-need, so he took a lot of time with Jason and I going over our "options" of how to do the two procedures.

Ultimately, the plan will be for the doc to clean up the prolapse and close the current tube-site. He had mentioned that it's grown close to the ribcage with 7 years of growing, so a future surgery would've been necessary sooner or later. The new tube will most likely be a couple inches below the current one. The doc mentioned going telescopically through the belly button to place it.

I was a little shocked to hear it would take about 2 hours to do, but I guess when you're dealing with closing up a site and placing another one, it poses more time needed. I asked the doc if we were able to go home the same day since we're tubie-veterans and he said to plan to stay at least one night. There is a 10% chance they'd let us leave that night if Jax is responding perfectly to pain management and no lung/gut issues 12 hrs after - only because we are veterans and have all the equipment already at home. So, I'll pack a bag for Jax and I and tell him we are staying so he knows what to expect.

We did find out that he has a 90% chance of getting a button placed instead of a peg-tube, like he first did as a tiny baby, so that gave me tons of relief. The sad part of the meeting was Jax's reaction to the doctor when he was laying on the table during the evaluation. The doctor showed us all what was going to happen to his stomach and Jax covered his face with tears and yelled out "I don't want it!".
Ugh.
This is so hard. He doesn't want it, we don't want it and I wish SO badly I could've made this journey end for him, but I can't. Jax is such a tough little cookie, but he's still a human. And a young boy who just wants to be a kid. We just need to get through this, so we can get back to a place of acceptance that our 'crazy normal' will continue to be. I think I always had it in my mind that if he got rid of the tube, he'd suddenly just not be medically fragile anymore. But when I really think about it... he's nowhere near that status. Of course he needs this, and I'm thankful we have this to keep the kiddo going. But... still. We all just need that mourning period of what we thought life would be like at this point and forge through.

Surgery is scheduled for Nov 9, so it's only a week away. I've started to think of some things that could make this easier on Jax. We've always used plain white tube pads through the years, so I've ordered some fun character pads of Minions and Star Wars. I figure that will make him excited to put them on the 'new tube'. I'm also making him a GB Packers fleece blanket. I'll bring them with and surprise him when we're in pre-op with these things. I'm making Brady a blanket too, and will have it as a surprise to him waiting on his for him on surgery day.

Oddly, Brady has a ENT checkup on his ear tube the same morning as surgery. So, we decided to just bring Brady with us on surgery morning so he can see Jax off to surgery. Then Jay will bring him upstairs to his ENT checkup and then he'll be off to school for the rest of the day. Brady was very concerned if he could "be there" with Jax, so this kind of solves that. Brady can come back after school to do a book reading with Jax, have some "dinner" and go home with Daddy, while I stay with Jax. Hopefully everything goes well with the surgery and we can move on quickly from all this!

In other news, but still in the tummy trouble category, Brady was up vomiting from midnight to 8am the night before Halloween, but then totally fine by dinner time. He decided to trick-or-treat and had a great time! We were hoping it was because he had a really bad eating day of sugar and junk on Friday. Now, suddenly Sunday night he said his stomach hurts again and was really uncomfortable and didn't leave my side, so I'm wondering if we'll have another night of vomiting?? Poor buddy... I feel awful for him, but can't help to be nervous Jax will catch this if it's a bug... it will be such a different protocol if it's Jax :(

This little godson turned ONE and one of my goddaughters turned FIVE this week.

Lovin' up on Big B

Jax's first grade Halloween group

Jax walking in his parade

Big B was DOWN! 

Good times!

Dynamic Duo coming at ya!

Amazing!

1 comment:

Matt & Shana said...

His reaction is heart breaking :(
HUGS!!!