Challenges and the Future

I have thought for a very long time about how to approach setting up this site. How to present things in such a way to help people understand we haven’t been irresponsible. How to demonstrate how huge the financial burden has been and what challenges still lie in wait in front of us. Right now we are in the worst possible position we could ever be in. My daughter is now 5 years old, still has a feeding tube she was only supposed to have for 6 months and nobody can tell us why or how to get rid of the problem making the g-tube necessary. I have to work endless hours to try and pay the bills which means we cannot travel to get her the care she needs and in traveling it means we have some extended stays in front of us.

I am now self-employed and this has given great flexibility but it also chains us down more than anything. I have to work so much to pay the bills that we simply cannot travel to specialized medical centers where our daughter can get the care she needs. If we were actually able to go to one of these centers she’d most likely need to stay for at least a month and we’ve been told that 10 to 12 weeks is much closer to what we should expect. We are falling so far behind on our bills as it is that there is simply no way we can afford to do this.

If we could afford for me to take the time off work to do such a thing we have another problem. The type of care our daughter needs is considered “nutritional” care and as such is not covered by a special program Katie Beckett or by Social Security Disability. We would have to pay for this care out of pocket and our pockets have been too empty for too long. There is simply no way for us to escape this trap we are in. Our daughter will continue to suffer from bowel trauma, we will continue to wonder why as we struggle constantly to just try and pay bills and buy food.

Our daughter has a gastrostomy tube at the age of five that we were told she would only need until she was one year old. Her stomach bloats out on regular basis and we frequently insert a tube into her belly to let air out that she cannot digest or burp back up. We’ve been told that if we want to understand why and how to fix this then we need to head to specialty centers on the east coast where we stand a much better chance of getting the care she needs.

Now these are the simple challenges that are in front of us that we can see. I will tell you that 90% of what we have been through so far we never saw coming. I have a 5 year old little girl that I know less about now (medically) than I did when she was born and we simply cannot afford to get her the care she needs to improve her health.

What other challenges are there? I really don’t want to know but I do know that they are out there and we cannot face them alone.