Tuesday, August 25, 2009

Jaxon's new gear!

Jaxon and I had a long day at the hospital today. He had his GI follow-up, which proved a great weight gain (20lbs 10oz), so his formula recipe will remain the same for now. We had lab work done to see if we could stop the iron supplement, and the GI doc also had some standard testing done to check other things out (white blood cell count etc).
Jax was able to get his GJ low profile MIC Key button today! It was an awful 10 minutes of a VERY upset little boy, but happy once it was over. Between that and the blood draw, I myself was exhausted after I got him home for a nap! I hate watching him go through these things, and he just doesn't understand so it's so heart breaking.
On another note, the GI doc said he has "an open mind" when I presented him the supplement list and independent test results. He took copies of everything and said he'll read everything more intently after his clinic. It seemed like he thought it may "help" Jax, but I don't think he's sold that it will "cure" him. He did say the statement, "his nerves are dead"...but agreed that our only other option is to continue antibiotic rounds when we see Jax relapsing and hope he can stay off TPN (IV feeds). He definitely wants to keep Jax flu-free this upcoming season since it sounds like it's going to be a bad season for it. We all know that a simple cold can send Jaxon into a vomiting mess...which leads to hospitalizations etc. We've been very lucky with the boy's health in this respect (KNOCK ON WOOD)!

Here is the old and new gear:

Jaxon's tube last night after bath time.
(off the pump)
Good bye to this!!
(when he's off the pump)
New button!
(off the pump)

The new button with the G and J extensions connected about to be hooked up to the pump. 
I hook an extension up to the G port to just vent into a diaper while he sleeps for tummy comfort.


shawna said...

Thanks for posting this. I didn't realize that the mic-key could be used with a gj tube. That makes me feel much better.

Amanda said...

Glad that you FINALLY were able to get it! How on EArth did you keep him from pulling on the tube?

NormalOnesLeft said...

Wow buddy, look at your new gear! Looking good handsome. I love you.
Auntie Krista

Laura said...

So do you love the Mic key button? I'm glad you found a way to vent without using the farrell bags. He is going to love the button!

Andrea said...

Yay, for Jax's new gear!! How did you keep him from pulling that tube? He is so stinkin' handsome!!!!

edasmommy0709 from Multiple Mamas

Melissa said...

Looks like my daughters tummy - she has the mic key button also!

goldenmama said...

Yay!!!!!! So exciting!!!

cat said...

That must be a bit more comfy for him.

Angie said...

Hi Annie! Jaxon looks like a different kid with his front chompers!! I'm glad he got his new button, it looks a lot more comfortable... and Brady won't be able to pull it out! Hope all is well!

Angie and Marley

Jenn said...

What a big difference...I wondered if you had trouble with him pulling the old one!

Linda said...

Yay for new gear! Glad to see he's doing well. i pray that the supplements help the little guy!