Since Thursday, Theo has been having problems with choking and spitting up. We think it might have something to do with his tube which was changed on that day. One of our home health nurses came over on Saturday and called the doctor who suggested we feed him very slowly. The nurse is coming by again today. She might just take the tube out and put a new one in again. Since we changed the tube he has had problems. One of us has had to sit up with him all night every night to make sure that he doesn't choke or throw up. We are just taking turns each night. Since I worked today, Jamie stayed up last night. We have had him on really slow feeds, like the doctor suggested and he is getting only 35 ml per hour, so it's nearly continuous all through the day, keeping food in his stomach just a tiny bit all the time so he won't throw it up. He is doing ok with that slow feed but every time we tried to speed it up a little so we can begin spacing the feedings out again, he began choking and gagging.
I had an appointment with the social security office today to apply for SSI (supplemental security income). I hope we will qualify because if he gets that, he automatically gets Medicaid. Plus any extra income will help us with the medical bills and any future expenses. But they told me today that they don't know whether we will qualify or not as it is a "needs based" program and we might have too much income. He couldn't tell what "too mcuh" is because each case is determined individually. We are in no way rich people. So the fact that we might make too much money is just ridiculous. Of course, they don't even ask what kind of monthly expenses we have or how much medical bills we have piled up, so I don't see how they can properly asses need when they don't know what our expenses are or what we owe. Anyway--if he does qualify, they will pay retro active benefits from the time of diagnosis, so that will be helpful, but we won't even know if he qualifies for up to 120 days. Though the guy said it could be sooner. You never know. It was really hard to go in there and sit there and talk about his case, hand over the medical records with the pages and pages of medication lists and tests that he recieved since his admittance date. Just being there in that situation, was one more heartbreaking thing. I haven't heard anything from the Medicaid office, though I did follow up with another phone call Friday. We got our first bill from the hospital this past week.
We continue to recieve periodic cards and checks from people with words of encouragement and financial gifts for Theo's account and we appreciate it so much. Jamie is looking into a charitable trust fund rather than the account we have now which is a custodial savings account. A charitable trust does the same things--takes care of medical expenses, needs, Theo related expenses, but I think donations can be tax deductible and there may be other benefits. We are trying to find out. Either way, all the money is going into his savings account right now.
I am going through a very hard time right now--it just seems some days are much worse, harder, than others. Please keep us in your thoughts and prayers.
Love to all,