Wednesday, January 16, 2013

Bad Bad blogger!

Man I have been a horrible blogger lately! I think part of it is Jax Facebook page is so much easier and faster to update. So this kind of gets pushed aside. If you want to follow Jax on Facebook, here is his page

Jax has been struggling a bit lately. He got the stomach bug that we all had. And while he avoided a hospital stay. (barely) It really hit him hard, and we are still seeing even slower motility. Jax biggest problem right now is his severe reflux. This is a big issue because the nissen surgery is so controversial. Its not a cure for reflux, and because brain injury kids have a tenancy to be gaggy and retchy, people just assume that Jax will always be like that. But I know Jax better than anyone, and when his nissen is intact and he can't reflux, he never gags or retches. Never. So I know he vomits from reflux, not from being a neuro kid. But because the nissen can fail, and his already has, people also say, how many times are you going to redo it before you cause more damage. I get that as well, which is why we are pursuing all options before making a decision.

First off is an upper GI sometime this week. Not my favorite test as in the past it hasn't shown reflux in Jax. They are only going to put a couple teaspoons of barium in, because of his high risk of aspiration. They don't want the die to shoot right up and into his airway. Next is surgery to scope from top to bottom, and take biopsies. Then we will determine where to go next. There are two options they are really discussing. Redoing the nissen one last time. This time it will be done open, which it should have been in the first place! So they can really get their hands on it and make sure its snug. If we do try the nissen, this will be the last time its done on him. If it fails again...well then we're screwed!
The other option was to put in a separate J tube. I really didn't like this option at first for two reasons. First, its another button on Jax belly that he can grab and pull! Second, it doesn't stop the problem of aspirating on stomach acid, which is what we are dealing with. After I talked to GI, I understand better what their reasoning is. Right now he has a GJ tube, which goes down past his stomach into his bowel. But he has ulcers in his bowel, and they are wondering if the tube is irritating the bowel. Also, with that tube going down, it keeps open the sphincter between the stomach and intestines, allowing bile to come back up into the stomach, and then up and out as vomit. The separate J tube would be much farther down, and it wouldn't be holding open that sphincter. I'm not sure right now which option I like. Actually, there is a chance they may do both. He needs this vomiting taken care of, because he can't be aspirating like this, its going to cause more major problems in his lungs. But if he does indeed have ulcers, than the J tube may be necessary. I just hope when the time comes, we do what is best for our little warrior!

Yesterday I had to take him for labs. He is still quite pale and lethargic from his sickness. Watching him get poked over and over, because his poor veins are shot, was almost too much for me! Even after years of going through this with him, for some reason that day was bad. After the labs were done, I sat in the waiting room and just held him for a while. I whispered how brave a warrior he is, and that I'm so very proud of him. Sometimes I just don't even want to let go of him. I'll just hold him and snuggle him forever!

As for Arina, she is still the same ole feisty maniac! Here is a special Gangham video of her. Seriously, I've never laughed so hard in my life!!


The VW's said...

Love your girl! She must have you laughing all the time!

Praying Jax's GI issues can get under control soon! Hugs!

Becca said...

Oh, sweet Jax... :-( I seriously need to hug that kid...

And Arina? She's HILARIOUS!!!! Love her moves - she needs to teach Sammi a few. My kid's got NO rhythm.

Anonymous said...

attach a bag to his g tube so it can vent and let the bile out whist feeding through the j. might not work but worth a try?