Update on Trent- we found out that another nerve may have been cut- his Vegas nerve which could be why he can't keep everything down and his voice sounds like an old man . He has to go in for more testing and surgeries..... Hold on tight, here we go again...
First test is next Thursday, it is during outpatient surgery so he will be drugged, which means I get to go hang out at the hospital. Now that I am done with school,  I will have to find something else fun to do. He gets to have a small microchip put in to test the reflux and then he gets to swallow a tube and water at the same time... good luck with that. They are doing the test because he is going to have a Nissan, which means they will tie the top of the stomach around the esophagus , which will make it harder to throw up, but also harder to swallow, so if it isn't reflux caused by the surgery and is just from the vegas nerve cut, that would be horrific to do it because he wouldn't be able to swallow. If the vegas was cut that means his voice will never come back and he will have to get injections every three months until they can put a block in for a permanent solution. Fun times at the Coe house.

Update

I am so sorry I have been such a slacker with keeping up! I have been busy trying to get my schooling in and those that know me, know how I have OCD and have to have it done early and perfect. Trent has been doing good considering. We have our team of doctors and Trent's case was presented in a meeting because some of the doctors are stumped. They don't know why this mass was growing outside of a capsule because usually with Castleman's it grows within one. For this reason they were debating whether or not to do radiation . We won't be doing chemo because the Doctor was able to get the mass and taking the phrenic nerve he couldn't see it spread anywhere else in the body. At this time it looks like we will just keep getting CT scans and making sure it doesn't come back. It's frustrating when its so rare that the doctors are printing things they have found off of google to us, that I have already researched. If it wasn't for Trent's nerve being cut I think he would be feeling fine. However, he can't eat much or he throws it all up. He coughs constantly and sounds like he has some sickness. I am sure when we go into public people stare at him as if he needs to wear a mask or something! It has been hard seeing him cough so hard he is throwing up, One night he wasn't stopping and just like when I hear my kids get sick I jump out of bed and am there rubbing their back telling them it's ok. I did the same to Trent and then asked him later if that bugged him that I was in there when he was puking up his guts. Let's just say I am the type of friend that would hold your hair back as you puke, I think I get that from when I was little and my parents would come in and help me and so I do that for my kids. Trent has started going back to work because quiet frankly, he has to and you know how he can be stubborn, but I appreciate him because I don't have a job and he is doing everything he can even in his sickness to support us. We are trying to find some medications that can help him so he can eat, he has lost over 30 pounds since his first surgery 7 weeks ago. This looks like it will be our new normal for awhile. We are so grateful for all the help we have received and all the prayers. Who knows what the future holds, we just hope it's each other.