New Tube On Thursday

Hey guys. First off, sorry I haven't been on. Been going through kind of a funk lately and I haven't felt much like blogging. Not to mention that I lost my USB to my phone so i can't really put pictures on the blog and I know how EVERYONE just LOVES to see pictures! And i love showing off my sweet girl too. She's been doing pretty well without her PICC line. We have quite a bit of new interventions, but they are all going quite well. She's on Vivonex 30cal/oz. I tried decreasing the cals to see if i can increase the rate, but every time i increase the rate past 30ml/hr, she gets into even more pain and areas of her intestines start to distend and it's just very obvious that she cannot tolerate a rate past that for more than a 12 hours. I am also putting pedialyte into her feeds to keep her electrolytes up as 30ml/hr is just a very small amount to try and hydrate her. It's working. Still, even at a rate of 30, she tends to accumulate feeds in a portion of her intestines just past the J tube. I believe feeds are accumulating in the Y portion of the surgery and this causes an extreme amount of pain for her. And so on Thursday, she is going to go back in and have a new longer J tube put in in an attempt to bypass this area of the intestines that is obviously troublesome. They are also going to be doing a dye study to see if there's any excess scar tissue or any other reason that the feeds would be accumulating in that area. I am sincerely hoping that it's just bad motility in that part as otherwise, she would likely need additional surgery and that just doesn't go over well for her.

Lately, we've been dealing with lots of tummy pain and thick thick dark green bile. She had a fever of 102 over thew eekend, but today she's back down to 100.8, i'm hoping the fever is gone by tomorrow and I think it will be because she is acting herself again. Aside from the terrible tummy, things are ok. It breaks my heart to see her deal with the pain though as she is in pain far too often from feedings. Remember, this and the bulging and the slow motility was very much the reason why the docs wanted her home on TPN. We will avoid this for as long as possible. She is holding on to a very healthy weight of 40lb. and aside from the pain and periods of very slow motility, she is doing well on this. We are learning to cope with a new normal and I have had to learn to try and deal with it. Quinn too. This very thick dark green bile drainage along with the severe pain is an indication that the motility has slowed significantly latelyl, which is likely due to the fever or the slow motility caused the fever, who knows honestly, but normally, i'd have taken her in at this point. However because we KNOW she has this issue and we KNOW the outcome, I'm keeping her home so we can deal with it here. We have urine dipsticks and we've been testing her ktones and specific gravity to ensure she's adequately hydrated, she's on round the clock pain killers and when i need to, i stop the feeds and run gatorade with protein and sugar and pedialyte added in and this is what's keeping her home and thankfully, it's working :) So please hope that the new tube placement goes well and that they don't find anything that might need "fixing".

Here's a video of the bulges.