Right Back Where We Started

A week ago today. So the whole plan of the longer j tube was a total bust. He did great over the weekend with it but by Monday his body was just not tolerating it. His intestines kinked around the end of the tube. We got the tube replaced with what we originally had. So back to square one.

It's just so frustrating b/c I was so optimistic about increasing Avery's feeds in order to reduce his IV nutrition (TPN) and it just did not work. I just feel like I am spinning my wheels. For a kid like Avery every way you turn there is a road block. If you try this med. then he will have an allergic reaction. If you try that med then he will have to get rid of other meds. No easy solution and surgery mainly a fundiplication which is what every dr. is pushing for would NOT be a good option and is "off the table" in my book. So we just trek along like we have been, on 18 hrs. of TPN and 15cc of j feeds and very very slowly try to increase them. And pray that he does not get another yeast infection in his line which is a huge risk for him.

He is going home on a butt load of IV antibiotic which is so frustrating b/c this kid is literally on the big guns (vancomycin) every couple of weeks. I just worry when he really needs it that his body will be resistant to it but we have to protect his central line b/c it is his life line.

I had a more indepth conversation with the pallative team about DNR. Rick and I haver started to discuss that he is FULL CODE for now but there are so many areas within that to discuss. Such as if he were to go into cardiac arrest would we want chest compression and cardiac meds. which could bring about significant damage. I don't think we would do that. Also we need a signed paper for home so if he died in the home we would not be investigated and have an automatic autopsy done. We could spend time with him as a family. I know it sounds awful but we HAVE to iron all this stuff out while he is not in crisis. I am ok with discussing all this and am at peace with our decisions b/c I know Rick and I have always and will always do what's best for Avery.

So for now we are going home like always and hope we get to stay there longer than 10 days. I don't know how much more I can take of this back and forth hospital stuff. It really does a number on you and the family. Rick and I need some quality time together and so does the whole family. Avery is feeling really good and looks nice and pink since his blood transfusion so we enjoy the good health while we can.

Hoping everyone has a great FOURTH OF JULY and that the sun starts shining through. Thanks all for your support and keeping up with the crazy Nault's.