Friday, October 18, 2013

Back to the big house!

Our week has been a bit crazy!
If you follow us on Facebook you've probably seen our problems with Jax J tube leaking. We've tried every tube brand, size, and depth! One may work for a while, and then the leaking starts again! 
Of course his poor skin around the site was a mess! We had many people say to try this and that, and yes, we tried everything! But no amount of wound care will help if the problem isn't taken care of! I've been begging for help from docs for weeks. GI says its surgeries problem. Surgery shortens the tube but it doesn't help, so she says she doesn't know what else to do! Last Friday I called GI in desperation! Please please help! They got him in to see her Monday afternoon. Monday morning he was vomiting, and bleeding from the site because it had gotten so bad! Her office told us just to go to the ER. That ended up being a big mistake! The ER called surgery. Of course the same doc said the same thing, I don't know what else to do but surgically close it! Of course unfortunate timing, Jax real surgeon that placed the tube has been out for weeks, because his dear wife passed away. I feel so bad for him, he's such a sweet guy, and I know if he'd been there he would have had a great solution! So then the ER doc calls GI, who never even lays eyes on Jax. He said to set us up with a wound care plan and send us home! I was beyond livid and attempted to call our GI, who is amazing! Her staff would not let me talk to her, but got us an appointment for the very next day at 10! So after I talked to quality management about how our situation could have been better handled, we left! Id rather his real GI make decisions rather than a GI on call that thought wound care would solve the problem of the tube leaking! 

The next day GI gave me her cell number after she realized I was not able to get a hold of her, and she sent us right back to the hospital to be admitted! At least this time it was a direct admit and we were able to bypass the ER! 
By this time his tummy looked unbearable! They cultured it and it grew out multiple bugs, including a fungus. Two different IV meds were started, and debate about what to do with the tube finally happened!

Yet another surgeon came up, and tried yet another tube. One I despise! It's a straight Mickey tube, no button, and no clamp! He's had this kind before and it's awful! The only good part is for now it's not leaking, but like the other tubes, we'll see what happens in a couple days or weeks! I still believe we need a long term plan on what to do with this site! I hate to pull it and go back to a GJ, but we may have to if this continues.
Yesterday his antibiotics were switched to J tube and we were discharged! The PICU attending said there was paraflu on the unit and he wanted Jax out as soon as possible! Obviously we were happy to oblige!
Now we make a bunch of follow ups, one being his surgeon that missed all the drama! I hope between him and our GI we can get a good long term plan!!


Crescent Moon Mama said...

Have you ever tried Cavilon, no sting barrier film? We find it worked better than many others we tried.

Crescent Moon Mama said...

Have you tried Cavilon no-sting barrier film? We found it worked better than others we tried. My son had open wounds on his butt due to diarrhea and chemo and that allowed his skin to heal even with a compromised immune system.

Runningmama said...

Oh Lacey, that breaks my heart that his poor skin looks like that, it looks really painful, praying that a solution that will work for more than just a few weeks is found!

viv said...

Oh my word that looks so painful, poor darlin boy. I hope there is a solution

Anon said...

oh honey!! Im so sorry, you are lucky to have such an amazing mom, get better sweet boy!