We Survived!

[Kayin]

Well, I'm not dead yet.

However, we're evacuated a county away, there's no real ETA for our power to come back on, and the destruction throughout my hometown is unbelievable. Our home is OK, but most of my family's homes are damaged, there are miles and miles of lines down, and communities all around us are simply missing. The storms were bad enough to actually rip up stone from the ground-not just pick up trees and fling them.

I did get a lot of pics on my wife's phone, and this is actually not even the worst damage we saw-out of respect for the dead, I photographed no bodies, but they were certainly there. I'm headed out to donate blood right now (I have a rare subtype) and if you are in the US, PLEASE DONATE BLOOD, if you do nothing else.

We're in a hotel put up by Children's Hospital since Snort is on oxygen, and we got a FEMA minifridge, but we're scraping for food since we're letting others get the immediate aid-we have some snacky type foods, but my bank account is dangerously low. Tuesday, if we get the all clear, we can go home and start helping clean up.

So, we're safe, if tired and low on blood sugar. Also, Snort says snort.

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Hard to tell it, but this is the remains of a brick gas station. Nothing is left.

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Gas rationing-there are three filling station open in my entire county at this point.

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This is the roof of my church. Last I checked, it was still on the ground and the pastor and the men of the church were at my great-grandmother's house getting the trees off it.

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These are some pics of my family's property. Roughly a million in damage is what the insurance people say.

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A beam from the roof of that brick building in the background went through that tree, shattering it. I have a 7' 6" armspan, I couldn't put my arms around it.

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Across the street from my great-grandmother...

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The front yard of my childhood home...

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Our shed is completely wrecked on the interior-the beams splintered under the trees.

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And this, I think illustrates how we feel about everything here.

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I borrow 'net from wherever I can get it until everything is restored near the house. I can read this from the phone, and give limited replies, and I'll let everyone know when I can do better.

Luthien's mother is in Trinity here, just transferred out of MICU for acute renal failure, and Snort's surgery went just fine-he was his old growly snorty self as soon as he was rolled out-deep in conversation with his Mr. Bumpy. Her mother is recovering slowly, though we've not gotten a prognosis yet. She was moved out of the ICU basically to free up beds, and we've seen the walking dead around here.

We will rebuild. Just take us some time, is all.

[Fuganater]

Glad to hear your ok mate.

[NightrainSrt4]

My condolences to your family and region.

[OvRiDe]

Phew... Good to hear you are still kicking!! Being from Oklahoma I have seen my fair share of storm damage, but it still just amazing what mother nature can unleash. Glad to hear that Snort's surgery went well. Thoughts and prayers are with you and your family. I hope all goes well with Luthien's mother. :crossed:

Hang in there, and keep us posted.

[DynamoNED]

My heart and prayers go out to you, your family and everyone else who has been affected.

[crenn]

Good to hear you guys are ok, not so good to hear about there being casualties...

[msmrx57]

Glad to hear that you're safe and Snort's surgery went well. Thoughts and prayers definitely go out for all who are affected. And hoping Luthien's mother continues her recovery. Take care of yourselves.

[x88x]

That's great to hear you and your family got out ok and Snort's surgery went well. My condolences for your damages, but to quote someone from this article (http://www.latimes.com/news/nationworld/nation/la-na-tornadoes-20110430,0,5265997.story) about the disaster, "Stuff is stuff, y'all is what's important." I hope you all pull through this stronger than before, and as always, if we can do anything to help, just say the word.

[lynn's engraving]

i don't know you, but i'm glad y'all made it through. i wish i had some encouraging or inspirational things to say other than stay strong. someday when things get back to normal, it's events like this that can be reflected upon and a keener perspective on what's important can be gleaned from having suffered it. it's too bad that this special insight too often requires a heavy price, but it's a value no insurance company could afford to pay. :)

[Kayin]

Well, update and more problems.

Snort's back at Children's, he stopped breathing last night and Luthien had to give him rescue breaths. We took an ambulance ride and found out the immediate reason was the refusal of his surgeon to give any more pain medication than tylenol for a hernia repair with the appendix inside the hernia sac. Secondary is the fact that all the surgeries that guy did may have been improperly performed. We're meeting with pulmonary Monday morning to get to the bottom of it-and Children's is pretty angry that someone let it happen in their hospital.

Luthien's mother is being tested for amebic dysentery, and as part of Jefferson county's water is undrinkable after the storms, we wonder about our area as well. We're avoiding the water for the moment.

Leave it to utilities to pile it on after something like this-the cell bill doubled. The charges aren't spurious, but they are storm-related. Verizon could easily forgive some bills right now, but they're not planning to do anything but rake in cash.

We're seeing kids in Childrens brought in form the tornadoes. Many are beyond help or hope. Some are brought in dead. The survivors are the most wretched lot of human beings I'll ever see-little kids screaming in pain and there's nothing more they can give them, broken arms, legs, skulls-it's worse than a horror movie out here. I don't really even sleep anymore, and every time i go in the hospital I wonder if I'll be called to give last rites on the floor.

Keep praying for us. Hell would be a nice vacation right now, but we have to keep helping those here who have less than us. Right now, that's a lot of people.

[x88x]

:eek: Ouch, not breathing is bad...are they going to have to redo any of the operations?

[Kayin]

Unsure at this point. We'll find out Monday any of that.

Right now we're just keeping him comfortable and resting. All we can do, give him some time to heal.

[Liquid_Scope_99]

Unsure at this point. We'll find out Monday any of that.

Right now we're just keeping him comfortable and resting. All we can do, give him some time to heal.

Hey Man i will be praying for you and your family . I live in Dekalb county about 10 to 15 mins from rainsville and saw a tornado go over our house our house is fine . We are too all of our family in rainsville make it out unhurt but many werent so lucky .I was wondering about you . You and Bert. hope they get all that stuff from the surgery we were at the hospital Wednesday with my wife for her gallbladder surgery it was canceled i know its not life threatening.She has been bad sick ever since . Our house is ok the power came on about an hour ago . I have been running like a mad man lol with a generator i borrowed and small one trying to save food for people. and get gas to people. I have the best in people 90 % of time . I have seen basically the same damage all through this area i hope we can all pray for each other .

[Kayin]

We wondered about you-glad to see you're OK!

Asher's getting his gastrostomy tube replaced with a shorter one to stop leaking, which is actually a really good thing. Other than that, we're just holding on. Rains at least are coming back in, there was mention of storming. We're hoping nothing else nasty.

[Liquid_Scope_99]

Glad to hear it. hopefully that will hel yeah i could go without anymore nasty weather for a while .

[Luke122]

Thoughts and prayers are going out to all affected!

[Liquid_Scope_99]

The only thing we personally lost i think was our new freezer runs but wont freeze lol . :facepalm:

[Kayin]

Just to let everyone know, we made it home for all of four days before we were back, now with a severe shunt infection. He's having surgery in a few hours to remove his shunt and put in an external drain, but we have other issues-there may be no site acceptable for a new shunt. He's had recurring hernias, so his abdomen is now out, which would normally then mean the heart, but we haven't gotten word back if he has Marfan's like me, which would make any heart placement pretty dicey.

An hour and 20 minutes of sleep last night, and a liter of Mountain Dew. It's what we survive on here. We'll have more info later today.

[x88x]

Wow, bad news. I hope they find a plane to put it.

[Kayin]

Well, he made it through shunt removal and g-tube repair, now he's resting uncomfortably in the PICU, but he's still giving them hell, so it can't be all bad.

(who are we kidding, we're so tired it physically hurts.)

[msmrx57]

Glad to hear he made it through. Hopefully you guys can get some rest soon.

[billygoat333]

I don't come to this site enough anymore, I miss out on all the news. Kayin, I can't even imagine what you are going through. My heart breaks when I think about it. My thoughts and prayers go out to you, your wife, your mom-in-law and your little one. Hope you can get some sleep, and food. If there is anything we can do for you guys, let us know. I will go out and donate blood.

Also, Gene I am glad you and yours are safe too!

Hope you guys can have a speedy recovery from your trials and have life go back to some semblance of normal.

[Kayin]

Surgery went well, then he fell to pieces in special care, and was summarily moved to PICU. His issue? Pain control. When we got to PICU, we got a doctor who knew Asher, wrote the necessary orders and late last night he finally stabilized.

If he stays OK, we'll go to a room tomorrow, and wait through two to three weeks of external drain before getting a new shunt. Also, his heart appears just fine, but there's still a lot of risk here.

[Kayin]

He's continuing a trend of downward slide. He's still dropping his sats, he's tossing violently trying to get the drain out and he's still having problems with bradycardia and tachycardia. If he's not better, he'll have to be sedated, which may mean going back on a ventilator with already damaged lungs.

We're gonna try and sleep, and pray it's better in the morning.

[x88x]

Wow. I really cannot imagine what you three are going through. Still keeping you in my prayers.

[msmrx57]

Thoughts and prayers are with you guys. Hoping your next post is of better news. :crossed:

[Kayin]

Well, today has been pretty much the end of the line for some things. Asher is still holding on, though a change in his sedation medication has left him unable to even take comfort from Mom, Dad or Mr. Bumpy. If he can't get his sats straight after the antibiotics, he has to have a pacemaker. Our money will hold out for one last bill, and we can't go to our vascular appointments tomorrow. We can't even get in the Ronald McDonald house again because SSI decided that even though we make less than a grand a month now, we make too much to get one red cent.


We are finally bereft of all resources. I'll try and sell my PCs, but nobody wants stuff that's not Sandybridge right now. I'll not be able to get my Celebrex for arthritis, and as of right now we live in the parking deck at Children's. We can keep getting Sarena's Coumadin, but we can't even afford to see if her levels are right any more.


Thanks SSI, I'm so glad you think we make enough to do it all.

[x88x]

Wow, talk about a string of bad luck... What does SSI consider "limited income" then? $1,000 sounds pretty limited to me, especially for three people, all of whom require expensive medical treatments. What are your long-term financials looking like right now? What happens if you can't make that next bill? How can we help?

[OvRiDe]

What a roller coaster. We have been trying to work out a possible Raffle, but we are still trying to sort out the prizes and vendors for the last one. This makes it extremely difficult to ask for some thing new when the old commitments haven't been fulfilled. I really have no idea where to go from here. We do have an upcoming contest, but its mainly being administered at the request of the manufacturer using their guidelines. If you have a paypal account we could maybe put up a donations thread.

[msmrx57]

If you have a paypal account we could maybe put up a donations thread.

What he said. I'm not in a position to help much but I'd be willing to give a little and I'm sure others would as well. Again thoughts and prayers go out for you.

[xr4man]

wow! this is bad bad news indeed.

i'm not the richest man in the world, but i can throw a few bucks in the pot if one is posted.

keeping you all in my prayers too.

[Kayin]

Finally, some possible answers.

We just met with the doctor from Genetics (incidentally, also my geneticist) and Asher is showing an abnormality they cannot explain, name, or predict a path for. He shows a triplication of the distal region of chromosome 3, in the q arm. It's impossible to predict at that point what the **** is going on with him, but at the moment it's a basis for other testing.

He also is still awaiting results to see if he has either of our disorders on top of this.

In better news, his sedation is working better, and they're starting to wean him off the ventilator. Also, his godmother is putting us up here in Birmingham, so we have less transit time. It's not a solution to everything, but it's a great help.

If people want to donate (as they are expressing) then my paypal is kayinstorm_at_gmail.com. We appreciate the well wishes too-we understand all some people have to give is hope and prayers. We think those are just as important.

[billygoat333]

Now if only I can remember my paypal password...

[Kayin]

Well, now for some good news.

Snort is finally off sedation, and off the ventilator. He's not happy with all the lines, but he's much more comfortable.

Also, the donations came just in time to fix two bald tires that I had to have pointed out (stupid failing eyes) so we're SO THANKFUL for that right now. It's amazing how well it worked out.

[x88x]

Great to hear he's doing better!

[msmrx57]

Glad to hear he's doing better. Can't say I blame him for not being happy with the lines but great news thats he's off the ventilator.

[xr4man]

good news indeed.

[x88x]

Hey, haven't seen anything recently; just wondering how you all are doing now.

[billygoat333]

Hey, haven't seen anything recently; just wondering how you all are doing now.

I was actually thinking the same thing earlier. Anyone have any news?

[Twigsoffury]

dunno but after reading through this, i'm definanatly going to try and dump 20$ in his paypal when i get paid.

i know its not much, but i'm thinking he might need that 20$ more then i need that video game.

[Fuganater]

He has been semi active. I see his last post was 7/04 so he is around.

[xr4man]

dunno but after reading through this, i'm definanatly going to try and dump 20$ in his paypal when i get paid.

i know its not much, but i'm thinking he might need that 20$ more then i need that video game.

that was my thoughts too. i don't remember how much i sent, but like you whatever it was going to be used for wasn't nearly as important as what kayin needs it for.

[Kayin]

We're still alive, all of us.

We move to a room today, we still haven't left the hospital. We're almost home, but not quite.

Those donations took care of our outstanding bills and fixed the car so we could stay with him. We appreciate it all so much, and we're glad to say we found the reason that he had the apnic episodes-he has severe epilepsy, but his new medication is working very, very well. We're now basically making the hospital happy with leaving with him.

We're not too active right now, both with my health (which is starting to fail) and with the time it takes to handle hospital, doctors and Snort. I have some stuff in the works, but until all the pieces fall into place (old friends and old scores, so to speak) I'll keep my hand close.

We thank you all again, and we'll update you guys when we finally go home.

[xr4man]

thanks for the update man. it makes it worth it to know we were able to help in your time of desperation.

[x88x]

Great to hear they figured out what was causing Snort's problems. And a treatment that works even! :D I hope whatever you have in the works pans out.