I'm the father of Katie Winn and before I do anything else let me first say thank you to all of you and especially Steve Jones and SQLServerCentral for doing this on Katie's behalf. I say Katie's behalf because it's important for me to remember that she's why I'm doing this. It's been very challenging but I have to do it for her and it that's what matters.
Steve has asked for an update and where better a place to put one than right here. (Steve, feel free to move this wherever you think it works best.) Also some of you may wonder why I've tucked a lot of the site away behind the media relations link. To be honest I just didn't feel like it was working. Prior to Steve's announcement here I wasn't getting a single donation in the last 9 days. I was taking some flack as being a scammer and a guy I respect at Code Project really go me thinking about how I wanted to do this. The news in this is that I'm going to be adjusting the site a lot and gradually I think I'm going to polish it a lot. I'm a Software Engineer a husband and a father. I'm not a desperate cry for attention and I think the site that is currently tucked away kind of has that feel to it. Oh poor me. Rescue me. I don't like that. I want to make it more informative, less emotional and I need it to get the attention of news and online agencies who have the ability to give me credibility.
UPDATE ON KATIE WINN:
So the site has a lot of information about Katie's condition, her birth and some of the things that have gone on but certainly not everything. I simply don't have time for that as it would take me and HIPAA both a year to wade through all the data.
But I'm going to shoot from my hip and tell you what we know and honestly it's not as much as we'd like to know at all.
Katie is now 5 years old and doing so-so. She has a lot going on and we don't understand half of it. For example it's 9:00AM right now our time and she's still in bed. She needs about 11 hours of sleep a night and is still tired when she gets up. For a 5 year old that's crazy. My other two kids at 6 and 2 years of age practically bring down the house after 8 hours of sleep and could power a small city if we put them on a treadmill. So Katie is tired * a lot * and that's been impossible for us to figure out.
We know that she's suffered extensive damage to her small bowel and we know that it's been cut and handled a lot. This handling and surgery makes the possibility of scar tissue and partial obstruction a real possibility and we have to be wary of that. Right now the going theory is that Katie has parts of her bowel that are damaged to the point that they don't contract at all or they contract in the wrong direction. Which parts of her bowel are affected? The short answer is that we don't know. Medically there's no way to measure that here in Boise, Idaho. We need to go to Portland or Seattle but I've been told that Boston would be best. Apparently in Boston they can spend about 30 to 45 days recording data from stem pads placed around her belly that will capture the contractions or lack-there-of from her bowel. They can use this data to begin building statistics and probably attempt to improve it with various foods and such. I don't honestly know. I'm pretty sure it's theoretical medicine and I'm very sure (but I haven't formally asked) that insurance (Social Security Disability Medicaid) won't cover it.
Why haven't I asked? Well I'm self-employed and have no idea how I would afford a 45 day stay in Boston or the costs of the related care. It's just beyond me to fathom that. I think I could move my office there and work short-term but the cost-of-living would be a huge hit. We might be able to stay with some friends but don't know that for sure or for how long.
We have maxed out our local options. Mario M. Brus is her pediatrician and he's the primary care doctor. Ellen Reynolds is her pediatric surgeon and she feels like she has operated and done as much mechanical repair as she can. Henry Thompson is her pediatric gastro-enterologist (SP?) and he's trying things but as of yet nothing has really worked. We are giving her Flagyl for 5 days at the beginning of every month to kill off the major over-population of bad bacteria. Then for the next 25 days we give her a probiotic trying to rebuild the good bacteria that the Flagyl wiped out while killing the bad.
A nutritionist who charges $150 an hour has tried to help us get Katie on a diet that will alleviate some of her symptoms but at $150 an hour we cannot afford to work with her very much as insurance doesn't cover it at all. So Katie has a ton of gas in her small bowel. Skips one meal a day on average because her stomach hurts and has a very watery stool about every 3 to 5 days that wipes her out. We don't have answers to the why and that's kind of what inspired this whole effort on my part.
Now feel free to email me and ask questions r#e#x#@#r#e#a#d#y#t#o#g#i#v#e#u#p#.#c#o#m (remove the #'s) or to call me at 208-353-3183. We can also do some Q & A here in this thread if it's okay with Steve.
But in a nutshell that's kind of where we are at but there's a whole lot more to it that's almost like black magic. We just don't understand a lot of things. Why can we accidentally pull her hair out in clumps when we brush it and other things like that which blow us away.