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|Tue, 03-20-2007 - 6:40pm|
I have a son that was diagnosed with coach syndrome when he was 3 months old. I am a first time mom and he is now 1 yr.1/2. My story is long and complicated needless to say with everything he needs I know it sounds stupid but I have no insurance and no medicaid etc... He has had two surgeries for his cleft lip/palate, he has a bard button for feeding and has had PETubes put in his ears for hearing he also has coloboma on both eyes and a detached retina on his left eye as well.
I am writing because I am tired and frustrated and hoping for some help and advice. You are probably wondering why we don't have any insurance when I got preggers with him It was all of a sudden and even though we wanted a child we thought that we would have time to sign up for insurance with our job. That didn't happen after my son was born I only actually knew he was going to be born with a cleft by the 8th month. Anyway, well I should put before he was born i bought or put a house under my name for my parents. The after my son was born the hospital put us on the medically needy program, soon i quit my job just to be able to get him medicaid he came home for a month with 1/2 liter oxygen and an apnea monitor. After a month he was admitted into TCH with pneumonia he stayed in the hospital for 3 months. They helped us get the mediciad he needed and we thought he would be taken care of. He was for a year and then this Jan. home care calls me saying that they can no longer come for his therapies because his medicaid is cut off. Thankfully his therapist got him into a charity and that is the only way they are able to keep coming. We applied for CHIPs and at first it seemded that we were going to get it we have been calling just the other day they told us we could start making appointments by next week now we called back to see how many Dr.'s they had let know that we could take him to see. Well they tell us that they have put us under investigation because I have my parents house under my name and apparently my husband makes too much. I know that's what it seems like, but it's not, with out help how will my son eat? (feeding supplies) I just don't understand how he can be denied medical care and his needs. I am sorry I am sure I probably am not even making sense. I just want my son to get what he needs.
Sorry to waste time.