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Katie Expand / Collapse
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Posted Thursday, July 12, 2007 9:32 PM
Grasshopper

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Last Login: Friday, April 04, 2008 11:57 AM
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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.

Post #381330
Posted Thursday, July 12, 2007 9:46 PM
Grasshopper

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Last Login: Friday, April 04, 2008 11:57 AM
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Matthew I just reread your whole post again now that I'm not working on a PC and all my kids are asleep. What a great suggestion and what a firm piece of encouragement. That's like total "coach talk" and that really is cool. You are right. Katie is bouyant. She has a laugh that spreads like a virus. If you hear it you'll crack up just because there's so much belly in it (which is odd really). Katie is fiercely defiant and if it hurts she won't say a word. She wants more than anything to be treated like a "normal" kid and she doesn't for a second want to be coddled. She will lead the charge into the fray for that very reason.

So you are right. Changing domain names or moving things over to pediatricparents.com (which I've had registered since 2003) is the right thing to do. As a father you make a good point. What values do I want to instill in my kids? "GivingUp" or "FightingHard"? That's a no-brainer and you make such a good point. I feel like a total "Duh!" for not seeing that sooner...

Thank you for the comments. The constructive help is totally so thanks!

Well erm... I owe, I owe so back to work I go...

Post #381332
Posted Friday, July 13, 2007 6:54 AM
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I hope you ask for help in all domains of your life. I also hope you slow down, consider full time work, and evaluate other lifestyle changes.

Most bankruptcies in this country are due to medical conditions. That won't go away with socialised care, because some care is done out of love and not out of cost efficiency.

Don't change your domain, just mirror the content/pointers.

Best wishes to you.

Post #381449
Posted Friday, July 13, 2007 8:28 AM


Old Hand

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Last Login: Monday, December 02, 2013 1:16 PM
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Rex,

   You have my prayers and best wishes.  I bought a ticket and wish I could do more.  I'll try to remember and get another one next month.  Try not to be to hard on the folks that got down on you thinking you were a scammer.  I'm an ex-cop and my first thoughts (even when seeing your post here at sqlservercentral.com) was "Is this a scam?".  Unfortunately there are a lot of people out there that will take advantage of others generosity by concocting such a story.  The really terrible thing about those type of people is not how despicable they are, but that they take money that might otherwise go to someone who truly needs it. 

   There are a lot of folks in similar situations and it is unfortunate we can't help them all.  However we tend to notice the ones that make the most noise, so as a father your doing exactly the right thing by making as much noise as you can.  Keep shouting, there is nothing wrong with asking for help.  

   Just two days ago I was complaining about the cost of sending my daughter to college (she starts this fall, Computer Engineering).  After reading your story I was reminded that there are a lot worse things to have to worry about.  While my contribution is small, I hope there will be many such small contributions and that they can help make a difference for you and your family.   

   I also wanted to add my thanks to Steve Jones and Red-Gate for taking the time and this forum to allow us an opportunity to help a colleague.  I know you can't do it very often but it is nice to be able to every now an then.  When I was in the Military and as Police Officer we always had "Funds" that we contributed to, to help our own when in need.  I'm glad to see a little of that here among Technology Professionals.  We can't help everyone but we can make a difference for some and that's a start.

Best wishes to all,

James.

 

Post #381495
Posted Friday, July 13, 2007 9:14 AM
Grasshopper

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I actually cannot make enough money with full time work. We'd be devastated if I tried that. As far as bankruptcy goes (and I cannot tell if you are suggesting that or not) my kids have been through so much stress already my wife and I both agree they need stability and we are going to do the best we can to guarantee that. My son (interestingly enough) seems to have been the one most severely impacted by this. He was first born and has an unbelievable memory. He got to watch us rushing around trying to save Katie's life a lot. He's seen paramedics at our home frequently. He's lost his room which is his domain so many times. We've had to move about 9 separate times since he was born and he's 6 now. My daughter Paige is also showing some signs of stress too. Katie is the sleeper in all of this and I know she's the worst affected one there is but she hides it.

No matter how much work I have I always stop from 5:30-6:00ish till 9:00ish and then work 9:00 to 11:30 so that I have time with family. I try to only work 6:30 to 10:00AM then 2:00 to 5:00PM then 9:00 to 11:00PM on the weekends so my kids get the most of my time. And if I do take full days off and I do I try to do it during a work week and they love that.

My only hobby is exercise and my kids. I'm fine with that because before Katie was born I had an unhealthy amount of hobbies that took me away from home for too long. I used to race mountain bikes and that's just a huge time suck. I'm actually really enjoying working at home where I can always see my kids. My office door is always open and they come in at their own will and I always stop to talk or help them on something.

Yes, I would just roll across domains with pointers or redirects.

Post #381516
Posted Friday, July 13, 2007 9:16 AM
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I think I look like a scammer. Unless I get a TV station or some other type of large well known public institution to help I'm going to look more like a scammer. The only way to offset this is to be really transparent at places like this message board so that people have enough to see and go, "No way he could make that up." I know there are people here who have been in similar shoes who can read what I've typed and would discredit it instantly if they thought it wasn't credible but it is credible and most people know it when they see how transparent I'm being.
Post #381519
Posted Friday, July 13, 2007 10:49 AM
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Another good example why we need a national health care system.

Post #381570
Posted Friday, July 13, 2007 11:06 AM
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Why does it feel like that one sentence is hugely inadequate for expressing the need and the solution?

I don't know enough about health care but I do know a lot about social assistance programs. I think if this nation wanted to do something great that wouldn't be nearly as daunting as nationalizing health care they'd fix the welfare programs.

My wife and I walked between the lines on every program we knew/know of and it's such a hassle. We get phone calls, quarterly audits and everything for a small $22 check we get every month. I know (yes personally) so many families that are taking advantage of the system and they don't have to do anything.

I think that social assistance needs to be hugely revamped and if you get welfare and food stamps a worker comes to your home every 3 months to assess your needs. In that time you demonstrate that you have been very proactive in trying to pull yourself up by your bootstraps and if you do demonstrate that but still are short (and you have a kid like Katie) you get hassle free help.

A social worker helps you to review needs both financial and medical. You work out a care plan for the next 3 months and she/he helps you by coordinating doctor visits, insurance assessments and other things. Reduce the number of people drawing social assistance by 90% because so much of it is fraud and improve the quality of it by 90%.

My wife and I don't know enough. We simply don't. We tried to get a nurse to help us with Katie a while back and the one we got was horrible. She couldn't have taken care of a stick of butter. But the nurse who came to give Katie a Synagis shot (a booster for RSV that's a $3000 per injection) was so dang knowledgeable it was insane. She sat and visited with us at length and did it off the clock. We only saw her 4 times ever but she went through our finances with us. She told us "how" to legally get around certain hitches in the system and to try and get help. She went through our infamil formula needs and said she'd fill out a slip for us to get a case of it for free. That case was worth over $1000 to us (it lasted about 6 days but it was hugely wonderful). This lady had so much knowledge and wisdom. She was a grandmother (of course) and had been a nurse for 30+ years.

I think the biggest problem is that the information and how to find it just isn't out there visibly. There's a guy here who's emailing me privately about the Katie Beckett program. He must be half attorney because he knows so much about it.

I don't know if we need to radify health care here. It seems like every time our nation does something huge like that they screw things up worse. I think what needs to happen is that the abuse of current systems needs to be aggressively pursued and stopped completely. I think that they should use as much money as they have but instead of spreading it to 90% abuse and 10% real need they need to focus it on the 10%.

If they fixed all the abuse and focused on a "One Stop" location that had all the information and each family was assigned a fully informed case worker it would help so much. I think there would be less of a burden on the system and costs would come way down.

That's my two cents but then we've been right in the middle of it so maybe should say that my four cents...

Post #381577
Posted Friday, July 13, 2007 11:12 AM
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Gosh there's a lot of information in this thread. I need to publish it somewhere... This is the most mature adult response I've gotten so far and it's really given me a chance to be transparent and to talk about all aspects of what we have been through. I know I cannot really prove a thing but hopefully the text here and the detail will help put people more at ease. I wish I could invite all of you to my house for a day just so you could see, touch and hear what goes on...

What a mess! What a total mess!

Post #381579
Posted Friday, July 13, 2007 11:53 AM
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If we had universal health care there would be a lot less headaches for you in general. It doesn't fix every problem but we have to get a clue and vote for it. It is our government and our money and we need to learn to to what other countries are doing for themselves.
Post #381596
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