Wow, thank you Brian!
To answer the question, "Why didn't we ask for help sooner?" That's actually been a pretty daunting experience. They detected Katie's problem in the 20 week ultra-sound before she was born. The O.B. saw some gray loops in her bowel that I couldn't tell from the paper but he saw it plain as day and knew what he saw. Immediately we did an amnioscentesis to rule out chromosomal defects and we did the only thing still out there is Cystic Fibrosis. But once we narrowed it down to a small bowel obstruction the O.B. said, "It should be a minor surgery to remove the obstruction and she'll be home in a week." So we thought, "Hey no worries we can do that." The hospital coordinator came around and said, "Do you guys need help with the financial planning of this?" We said, "No, she'll be here a week and we have insurance." (Wish I would have known at that time that Micron would lay me off a year later.) So the care coordinator disappeared never to be seen again.
A bit later that day the Neonatologist comes by the room and says, "Bad news. Katie probably doesn't have enough bowel to live on." We flip out naturally and he says, the laprascopic procedure tonight will confirm the diagnosis and if we're right she'll go home with you and slowly die of starvation you should get a few weeks with her before she dies. Wow! Great!
So we bite nails waiting for the surgery and the surgeon calls and says, "The good news is she has plenty of bowel the bad news is that it's not real healthy." Nobody told us she'd be there for 2 more months. When your child is in the hospital and on life support you really aren't thinking "How am I going to pay for this." When she finally comes home for more than a few days four months later you might start thinking about those things. We didn't get a chance. For the next 8 months she threw up a lot and we were in a fight to keep her alive. We had paramedics over for some late nights. We were almost always up all night taking turns sleeping and finances... Well crap. We were between the house and pediatrics a lot. We were buying formula and skipping meals ourselves. Neither the pediatric surgeon or the pediatrician ever bothered to mention the programs that were out there. We knew we were maxxing out financially but if you know the "Laws of heirarchical needs" very well you'll know that survival tops the list. We were fighting for survival. I remember 1 day after I had foot surgery and was supposed to keep my foot elevated I had to rush Katie to the E.R. walking on my foot to get her there. My foot has never been the same and it's hurt ever since. We were in full on "fight or flight".
Then in October of 2002 we had the G-tube/fundo surgery because Katie was dying and we couldn't deny that anymore. We had to save her life. Even if it means sewing her esophagus so she cannot throw up might mean she cannot have kids because of morning sickness we did what we had to do. We thought after that surgery we would be better off. We weren't. For the next 2 years Katie kept trying to throw up on the same interval if not every day every other day. We were more stressed out than ever before because we now had to pump stuff out of her stomach. Were we thinking about money? Not until I got laid off in 02/2003 then suddenly we were moving in with family and I was desperately trying to find work. At that poing the Pediatric Surgeon says, "Hey have you heard of Katie Beckett?". We were like, "What?" and she explained it to us. We frantically did everything we could to get into that as fast as we could but they don't back date past 90 days. So no real help there (she actually told us about Beckett in 2002...anyway).
Then I thought I had a job for $90,000 a year. But 9 days after they hired me as a 1099 and 7 days after we bought a house they let me go because they lost the contract they hired me to work on. Now we had real money problems. But again life was so fight or flight you don't have time to approach the internet (something you know next to nothing about) and try to drum up help. I tried in 2003 and 2004 you can search codeproject.com for pediatricparents.com but nothing really turned up.
Only now when it's obvious that we are way, way, way over-cooked do we see that we need some help. Only now after working 80 hour weeks for 3 years on ASP .Net sites with SQL Server backends do I know how to use the internet and have a good position at codeproject.com to work from. I have some credibility there. Not a ton because there's no face value and I'm asking for money. Still the visible support has been amazing.
Aside from us being locked in a "fight or flight battle" and hardly having time to think at all from 2001 to 2004 and then me working frantically from 2004 to 2007 to cover the bills we did have... It's been pretty hard to come up with any type of reaction plan. My wife and I have never ever been through anything like this. There is no manual out there that tells you how to prepare and plan for things once you are in a fight for survival. It was very hard to remember to bathe and there were 3 straight years where I bathed about every 3 days on average.
We should have asked for help sooner but where and from who? It was hard enough just to find the time to cook dinner. We've eaten so much mac & cheese and baked potatoes that it's all we know that and lots and lots of eggs. Cheap staples are what we lived on. Shaving every 3 days was a way to save money on razor blades and shave gel. We did what we could and we did what we had time for.
I just don't know what else to say to answer that. It's been really hard just to manage life.