CNN iReport

Not sure where to begin, but we need your help if possible. I'll try to keep this brief but poignant. We are coming up on the holidays and my family is suffering unbearably. My name is Vicki Peterson, I am a RN since 1984, my background is Critical Care Nsg. I have one child Nikki and Son-in-law, Billy, both from Tulsa. They have one child together, my granddaughter Londyn, 3 yrs old this month, and Billy has another child Rylie, 4 years old. Billy was a healthy 29 y.o. male, working and taking care of his family until Last Dec. 30th, Londyn's birthday. He became acutely ill, and was admitted to the hosp. Jan. 6th. Billy has not been home since that time. He has been in a total of 5 hospitals, being passed around without a specific diagnosis. He has been to Barnes-Jewish in St. Louis, Columbia, Missouri University Hospital, and now O.U. Medical Center in Oklahoma City, OK. Billy is gravely ill, he has lost 100 lbs since admission. He has some form of b-cell immunodeficiency, but not primary in nature. He is severely malnurished, and has malabsorption issues. He has a severe form of protein enteropathy. He suffers with acute/chronic abdominal pain, Nausea/vomiting, repeated life threatening infections one right after another. He has sloughed off the entire mucosal lining of his intestines. He has been in and out of ICU, intubated/extubated, tracheostomy, at one point in the begining he was in HUS/TTP and in acute renal failure for which he rec'd dialysis for a month. The doctors are all baffled and not sure what is wrong with Billy. We do have a physician from NIH, one of the leading immunologist currently consulting on Billy's case. He has had every test under the sun done, and ruled out numerous diseases including many rare diseases. We have been told that this is "Billy's Disease", and that this would be written in medical journals. Our family is at a loss and devestated. My daughter and granddaughter live with me. He and Nikki have missed out on an entire year with their children. Billy had just started a new job in Kansas so he didn't have insurance. We were able to get him a medicaid card, and applied for disability after we realized Billy was seriously ill. Once the disability kicked in Kansas cancelled his medical card. Now we are at the mercy of the hospital for his care and expenses which are in the millions. I know this for a fact because his first month in the hospital his bill was almost 1 million dollars. Each hospital after a couple of months is ready to pass Billy to another hospital due, partially, to lack of insurance. Billy is slowly dying. We need to get the word out in the public, because I feel certain that somewhere, someone has seen something like what Billy is going through. We are out of resources ourselves. I realize the costs are phenomenal to the hospitals, and a strain. At one point this current hospital attempted to send him home. That would mean a certain death sentence for Billy. He has been on TPN since march, can't tolerate tube feeding although he does have a peg tube. At times he does try to eat, but has not been successful in meeting his dietary needs, as he cont. to have nausea, vomitting, and diarrhea. He is receiving IVIG weekly, Palifermin, an experimental drug to attempt to rebuild his mucosal lining in his intestines, steroids, and freq. antibiotics for his freq. infections. After much protest and threats of going to the media the hospital has changed their mind about pursuing discharge. At one point the medical case manager said to me, "he can't just live in a hospital, are we just suppose to assume the cost". I asked him, "can you put a dollar value on a man's life, he will certainly die if he goes home and we don't have the financial resources anyway". What are we to do? He is only 29 years old and has two small children. If they could tell me Billy has cancer and only 3 months to live I could understand taking him home on hospice. But they do not even know what is wrong with Billy, specifically. I just cannot accept his demise without a fight. We have to find an answer to help Billy overcome this catastrophic illness. I feel seeking out the media to get his story out could help. I cannot believe that this illness has not been seen or treated by someone before. It may be a combination of diagnoses. Billy has been in the hospital almost 12 months now, I am so scared the hospital again will try to pursue discharge at some point. He is not just "living in the hospital" as the case manager put it, he is "surviving" in it. Please, Please tell me you can put his story out there. I am sure I have left probably some vital information out, but it has been a long year with many stories to share. Good and bad experiences for sure. We are on a constant roller coaster everyday. If this were your child, your son, I am sure you would do everything in your power to save him. You can contact my daughter via email at nikkibilly1@yahoo.com, phone 620-875-3731,Billy's Myspace page at http://www.myspace.com/billyandnikki1 or he has a support group on facebook.com under Nikki Peterson, it's under the groups application under Billy's Support Group. We have also attached some before and after photos of Billy! My daughter is probably more assessible, but my phone # is 316-304-7719.Thank you so much in advance for your consideration. We will forever be grateful if you are able to help us. Respectfully, Vicki and Nikki Peterson