Now what do we do???

So I guess I now need to update Talan's blog. This is his mom (Jen)  and I think we have all about had it around here. I'm going to get quite blunt here hope none are offended. As of last week September 28, 2016 Talan was discharged off of hospice because they felt he was not dying fast enough. So they left us with no recourse of action for a plan for him to get his meds he has been on for the past 8 years!  We were hoping to get him on another hospice care plan or palliative care and they both turned him down because they felt he wasn't dying fast enough or he was chronic pain and needed to be seen at a pain clinic! SAY WHAT??? And that's great no pain clinics will take him because of the meds he is on, and we were told to put him on hospice care at this point from pain clinics! He has been denied from every sources we have tried!
So let's get this straight! HE is TERMINAL and who knows he could have more wrong with him than just IGg4? He has not been genetic tested yet because every time we try to do that they tell us they need a diagnosis that we are aiming for? Well when your RARE how are you supposed to know what your aiming for, for a diagnosis? For reals?  I'm so tired of being pushed around from dr to dr to place to place and getting the same answer, sorry don't know anything about this can't help you until Talan has finally give up on going to Drs because he gets pushed off. I can't say I blame him! We have less than a week to figure something out with meds or we could lose him to lack of medicine and neglect from our own healthcare system!
What do we do? Where do we turn? We are literally doing all that we humanly possibly can do to help him. I'm afraid he will become a statistic if we don't get help soon! Neglect statistic. We can't just go live in a hospital every certain amount of days or hours to get meds. Why? Why no help? I don't understand! I hate RARE because you don't get help and they try to tell you how you feel or should feel instead of having sympathy that the patient is really suffering! Talan doesn't want to live this way? What 25 year old wouldn't want a life? So your telling me that someone's lungs that are turning hard from lower to midway up and has only 60% or less function and is at moderate restriction and when he exhales his every breath, air is getting trapped. He is on 3 1/2 liters of O2. His digestive tract is turning hard from his  esophagus all the way through, and his abdomen, legs, arms, around his jaw area is not enough to help him? He is in chronic pain because he broke his back at age 16 and has an intrathecal pump giving him meds to control that pain. He chokes on food as it is going down, he has eosinophils eating away at his esophagus all the way through because he over produces eosinophils at the bone marrow level.
While on hospice in two months he lost 20 lbs, then in one week he gained 10 lbs.! Ok hello people that is not normal! It is water gain and he continues to have more water building up in his system! We know his cortisol goes all over the place and causes that but we don't know why? He also has been throwing up, very nauseous, and yesterday he had something rupture that we thought was a hernia, but popped with the most discolored blood and puss. And of course we can't get into the dr until Monday. That is just a GP because guess what? He has NO DR overseeing him nor helping him! He just sits here at home and plays Xbox to let the time pass by. He told me today he feels like he's getting sick and literally can't even play Xbox because he is so wore out! He tries to sleep but can't sleep because his body is to tired to sleep. It's such a vicious cycle.
I myself have had some serious health issues the past few months and I was diagnosed rare also with causalgia (complex pain syndrome to do with peripheral nerve damage.) I have been doing my best to take care of Talan on top of my own health issues. My husband is busy working 4 jobs to keep me home with Talan and he is wearing out. We have had family falling apart issues over so much stress due to caregiver wear out and the stress of a sick child. I only have two kids one is sick and one is normal. You can only imagine how they both feel! So many mixed feelings of why me on both of their thoughts of sickness and being healthy and the guilt that comes with it. It's no ones fault in particular it just happens when there is so much stress. I love my family more than any words can say!
I'm tired, Talan is beyond tired, my husband even more tired. I feel horrible as a mother feeling hopeless and helpless not holding my family together better and not being able to help Talan anymore than I am. My children don't even hardly talk to each other and it makes me so sad. One day we will understand why we have had these trials, but until then I wished I had a magic wand to make it all better.
I'm praying that God hears our prayers with plea for help from someone that truly cares! I'm trying to hold it together but I'm getting low myself! Having faith is all we all have to help us through day by day, hour by hour, minute by minute. I wish some laws would change to help these poor sick rare people out that have no other choice but to fight for every breath they take!
This is a plea for prayers to be answered and for peace and comfort come to all of us!
We thank all of you for your love, concern, food brought in, help with Talan when we need you and especially to my RARE friends and family that are always there for me no matter what! Love you all!
Please pray for Talan that he may continue to fight and we can find help for him SOON!
Much love, Jen