Sunday, January 11, 2009

Day 225 - Jan 11, 2009

I wish I could say that things are getting better, but they really aren't. I feel so trapped. Trapped because I don't feel safe here and yet we really don't have anywhere else that we can go. There are only 4 polytrauma centers in the US (and most of the people here have come from one of those four because they were so bad). Yes, I know we can go to the private sector, but Kevin shouldn't be in the cold weather (and this has been verified by many docs since first mentioned to me) and most of the best neuro hospitals are in the northeast. Too cold.

I do plan to call two renowned neurosurgeons tomorrow morning and see if anyone is willing to come here and help us out. That's the only thing I know to do for sure at this point.

To be honest, I am not really up to writing much tonight because there is just so much swirling around in my head. I got into a huge fight with our surgeon today and on top of that, I found out that Kevin really isn't stable enough to be back in his room - yet ICU won't take him and oddly enough - the neurosurgery team refused to be his primary team because they don't feel he is sick enough. Pretty funny considering he is leaking CSF and blood from his ear (which btw, leaves an opening for meningitis), his head is swelled again, he needed blood and he has a small hemorrhage in his brain from surgery. Not sick at all, right?

Oh, and did I mention that nobody actually did call the company rep for the shunt that nobody knows how to work? Yeah. They decided to just keep trying to figure it out all weekend, taking numerous x-rays in the hopes that the light will turn on and then if it doesn't - we'll just call tomorrow. Assuming they can get someone, right? Hmmm. It's now been 3 days - tomorrow makes 4 - since they knew they couldn't figure out how to work it. But that's ok. He's not really sick.

I feel so much despair. And so does Kevin. He still cries every time he touches his head. He also cries every time someone comes in to do more tests or to draw blood or to take more x-rays or any of the numerous new things that are necessary. And to be frank, it's getting harder and harder for me to fake like things are going to be all right when I am just not so sure they will be...

41 comments:

Denver said...

Your blog gives you a louder voice because so many people read it.
Thanks for letting us know.

LISA said...

Leslie,

Before he had his surgery, I suggested talking with the doctors to question and to be on the same team with them and to gather info. I don't know if that happened or not.

I am now suggesting you talk to a "medical attorney" who can greatly advise you and the sooner the better. They are educated to handle things like this and have done so in the past. They know where to go for help.. where we do not.

This is Kevin's life...they can lead you in the right direction for the proper medical help and see to it that nothing like this ever happens again.

You need someone professional on your side and you need it NOW !!!

I hate to say it again, but they can be doing your research and getting you places QUICK, while you stay with Kevin and put your worry in the hands of your legal advisers.

Kevin needs you with him now, especially with all of the added issues he now has since the surgery. He most definitely needs to be in ICU..unless someone is with him 24 / 7 that knows what they are watching for.

If you didn't cry out for help, I wouldn't be here right now...trying to help with all the help I can think to suggest to give.

God Bless you and be with you always. He hears your cries and He hears Kevin crying...this life is not easy. We are not to question..but oh so many times I wonder...why ???

Praying for answers and solutions..soon. Kevin deserves better than this. God be with you..always.

STAY STRONG and focused.

Anonymous said...

I know you don't like to ask for "favors". I recall many people offering help to you in any way they can. The one that is sticking out the most right now is the retired military guy with your same last name. Call him. Pull all and any strings you need to pull! Take all offers and favors. You are not in this fight alone. Call everyone! Call the press! Scream & yell until Kevin gets the help he needs and deserves.
My prayers remain with all of you for strength and health.

Holee said...

I wouldn't trust anything these doctors say including he shouldn't be in the cold.

First I'd save his life by taking him to the best place to deal with the problems, even in a cold state. Then I'd deal with the issue of where he needs to live.

In a real hospital he wouldn't be allowed to come & go so he wouldn't be in the cold. He'd have his own doctors, they would fix the problem and send him home.

The best hospitals are in the Northeast, so they draw the best doctors.

In a regular hospital you might have to back off a little. They wouldn't allow you to stay with him in ICU.

I think everyone reading about Kevin wants only the best for him. Right now the best hospital seems more important then any climate or house.

Long-time RN said...

Do whatever grabs further attention to Kevin's case. He should be in ICU. Can someone give you the name/phone number of the shunt manufacturer and the specific shunt model? Perhaps calls from across the country on Kevin's behalf may get a rep there or at least on the phone to Tampa.

I'm so sorry, Leslie. Just heartbreaking to read your words. So sorry you're getting a pass the buck run around by the medical team. After all these months and such hopes for this surgery, this is a real kick in the gut.

Please know we're lifting your family in prayers. Hang tough, Leslie. Can't imagine all that's going through your head right now.

(((Hugs)))

Alison said...

I just don't know what to say. I have been sitting here with an empty comment box for several moments now and just...the words are not coming.

I think that Lisa's suggestion of a medical attorney is a good idea, at this point, because this is getting plain dangerous for Kevin. He is not being treated like he should be and he needs and deserves better. All our servicemen and women deserve better than this.

I think that talking to your local Congress reps might be a good idea, not just you Leslie but anyone who reads. Is this what we want our troops and their families to deal with? Is this what we would want our sons and daughters to deal with? The system is flawed and it needs to get fixed NOW.

Extra thoughts and prayers coming your way. Also yes, if you can get info about the shunt, we can put some calls into that company and tell them to get that rep down there NOW to make their product work.

I wish their was an easy solution but there is not. Things will get better even if we have to fight for them. We are all behind you guys and supporting you all the way...

Anonymous said...

Leslie,
I am so sorry, that this is such a bad time for you and Kevin. You have been so strong. There is strength in numbers. If anyone out there can give us a list of people to contact, we can start an email, phone chain.
Love to you and Kevin, prayers for all involved.

Anonymous said...

Kevin deserves better treatment than he is getting there.

I agree with Holee, even though Kevin would have to travel to the cold climate, his room would be climate controlled and he would not be affected by the temp unless he was released. The only time he would have to deal with it is going to the facility. Get him corrected.

You have 5000 things going through your head right now. I also agree to get a Medical Attorney and contacting your friend again. You are being told he does not need ICU but it is obvious he does. If they are not going to listen to you maybe a higher up and the Attorney will kick them in the back sides!
Love Ya
Susan

Anonymous said...

Leslie, I am reading everyone elses entries trying to figure out what I can say honey and nothing comes to mind except that I love you guys and I am praying for you. Tried to call last night but I know you are to busy right now honey I will talk to you when you can find the time. God love Les, you are one WONDERFUL, tough MOM. Love ya bunches, Pam

Anonymous said...

Give the News stations a call tell them everything that has happened and when they interview you look right at the camera and say "Where are the people who know how this stunt works?!!" and ask "why do the men and women who are injured during war not get the care they need and deserve?!" Its not just your hospital that does that there are alot and they need stopped. And the bigger you make the issue with the press the quicker the people who made the stunt come to fix the problem. And Yes get any attoney! That seems to get people rolling and figuring out what the problems are and gets them acting to fix it. Must people and companies don't want to deal with lawsuits especailly medical malpractices.The louder you are the better off you are.

Anonymous said...

Instead of you dealing with the house issue you or someone close to you should apply online or call Extreme Home Makeover. They very well may help you in alot of ways.

Miss Em said...

Leslie

Oh just bloody damn Hell.

1. Lisa mentioned a medical attorney, call one.

2. Call the Sargent Major and get him working on that end. I bet he will be really P.O.ed because of the treatment that Kevin is getting.

3. Contact your medical advacate there at the hospital and let her know that you are pulling out your guns and starting to use them.

4. Get the name, serial & model number of that shunt and the phone number then you, the medical advocate and the medical attorney call them. Let them know that it is NOT working and to get a rep. there yesterday.

5. Contact the head of the hospital and make sure that he/she knows what is going on with ICU and the surgeons.
**Make sure that he knows that you have been one of Kevin's main care-givers. Let him that you know that what is being done with Kevin is NOT in his best intrest.
**Make SURE he knows that you know that the PRESS would just love to get a story like this and that you will go to them if this isn't corrected immediately.

Make SURE you let your medical advocate, medical attorney AND the Sargent-Major know this is what your planing to do because its Kevin's Life that they are playing around with.

Make a point by point list and give it to all that you contact.

O-kay PIT-BULL MOM -- 'sic em'. Give those pompass a$$holes a new way to go to the head.

Kevin,

Trust your Mom because she the best 'Pit Bull Mom' and she is in your corner.

Don't give up. You are a Soldier and Soldiers of this Country ...
Don't Quit when the going gets tough. They get tough and keep fighting.

Prayer Candles lit and whispered words are on the rise to the Creator's ears.

Miss Em
Austel, Ga

i. said...

I have to agree with drawing attention to your plight. In addition to the list immediately above, I would include state senators, both from back home in PA and for where you are now. I would also contact the press, both military and civilian, and again in PA and locally. For the press, make it less of a bitch session (save the bitching for all the folks in charge at the hospital/military/government)and more of a plea for help. The more people that hear your request, the more likely that someone will connect you to the people who can truly help.

Any chance there is a great neurosurgeon out west? I know it's further from home, but the weather would be on your side.

Anonymous said...

I am so very sorry that things are going so badly for Kevin and you...
It sickens me how they deal with our heros and I think you need to get your congressman down there to see what is going on...
I am ashamed of knowing what is going on with you and not being able to help...
So all I can do is keep on praying for you and hope that everything will get better soon...

Tina Dwyer, El Paso,TX

Anonymous said...

Leslie,

I know you don't need one more thing to do, but I strongly suggest you get a notebook and keep a very detailed, accurate account of what is happening every minute of the day. When you talk to anyone abuot anything remotely related to Kevin and his care and concerns you need to document it. Place, people, date, time, and the basic conversation.

Hang in there!
Pat

Anonymous said...

Leslie I have been praying for you guys since the first day I Heard about you guys. I will continue to pray and ask him to please make things better. Remember u have alot of people praying. God Bless. Lori From Pittsburgh Pa

Anonymous said...

I left you a comment yesterday and wanted to let you know my son is also a 173rd wounded. Again, call if I can help. Sue

Anonymous said...

Call the legal department of the shunt manufacturer--you can probably find the info on their website, or you can call their main corporate HQ and ask to speak to their products liability counsel. They will take action immediately, if only out of self-interest. The reps and salespeople are clearly useless in this situation.

Linda said...

Leslie,
I hope you don't mind, but I emailed our newly appointed state representative in Clarion County, and gave her your blog spot addy and ask her to read it. And if there was any way she could help, or put you in touch with someone who could...all help would be appreciated. By the sounds of things..need any kind of advice you can get from someone who is in the position to help or could put you in touch with someone who could. Again...hope you don't mind! I just want to help in any way possible to get you and your family thru this terrible ordeal!!

Linda said...

Leslie,
I forgot to put this on my post....there are also a few law firms handling cases of wounded soldiers and their families pro bono. This is their web address if you would want to read about them: http://www.ptsdsupport.net/lawfirms_fight_for_wounded_warriors.html

mercedes9 said...

I read about Kevin on Daily Kos--have you contacted your congressional reps from Fla.--you have two Senators and 25 Representatives (I don't know which district you are in). Tell them the situation-and then call a lawyer.

Senator Bill Nelson (D- FL) 202-224-5274 202-228-2183 http://billnelson.senate.gov/contact/email.cfm

Senator Mel Martinez (R- FL) 202-224-3041 202-228-5171 http://martinez.senate.gov/public/index.cfm?FuseAction=ContactInformation.ContactFo
You can also contact the IAVA-Iraq and Afghanistan Veterans of America-- http://iava.org/

Kris said...

Oh man I wish there were words of wisdom. I wish there were real words of comfort that could be said. More than any of that, I wish there was a way to make all of this go away for you. It's just not fair. I just want you to know that we're all out here praying for you and praying with you. Every step of the way. You've got quite a possie of fans out here, USE US IF YOU NEED TO!!

Thoughts, prayers, support, angel hugs and LOADS OF LOVE are coming your way guys. We're all out here praying for you and praying with you. (((((Leslie, Kev, Breezy)))))

zoliepup said...

Hi, I found you through a diary post on Daily Kos. I have to say that to give Kevin the best chance, you need to get him transferred to the best neurosurgical trauma unit that you can find. Hospitals in the Northeast are just as warm as hospitals elsewhere. Don't let people there scare you into staying when Kevin needs higher level care.

I could tell you stories about what I've seen coming out of military facilities, but that wouldn't be productive. Please consider it!

I'm wishing you the best.

Anonymous said...

I am BESIDE myself so if I transpose some numbers or letters, I apologize. I did some reasearch and here are some possible contacts. I know you don't have much time to contact these numbers but I thought I would at least try to offer some help:
Dr. Sigford and Harriet Zeiner (if you can get a hold of them)at VA Polytrauma Center in Palo Alto 1-800-999-5021; Susan Conners, Pres of Brain Injury Assoc of America www.biausa.org, 1-800-444-6443; Rehab. Institute of Chicago; Defense and Vet. Brain Injury Ctr. www.dvbic.org, 1-800-870-9244; thehomefrontcares.org;Cognogenesis BRRAIN (Brain Injury Resource) 1259 Lake Plaza Dr. #130, Colorado Springs, CA 80906; Subtle brain injury (seach), Brain Injury Law Group 1-800-992-9447; Military Attorney www.gs/attorneys.com/military 1-877-TOP-JAGS

Sanjay Gupta? Gary Sinese?

Thinking of you and Kevin....

Cathy M

mme6546 (michelle) said...

I'm another from DKos, and anything i can do...well, yea. my biggest asset is i've got a big mouth, so directing any and all traffic i can to here, figuring the more pple, the more ideas/donations/help, the better.
if on good days, TV and movies are ok, what about an audio file of somesorts where us random strangers can tell Kevin Hi, and we're pulling for you? anyone on this comment spot got the tech-savvy to set something like that up? i know id be willing, for one, to recite every limerick, knockknock joke and groaningly bad pun in existence if it'd give you a moments rest and Kev a 2 second smile....

Shawnsgirl315 said...

Leslie,
I have never posted before, but followed you here from ScrapMuse. You reached out to welcome me from my first day and that stuck with me. I agree with everyone else. It is time to start raising hell. Use us. Give the okay and we will all be behind you as much as possible to get any/all attention brought to this horrible situation. Noone should have to fight this large of a battle by themselves. I am sure anyone who has followed your blog would be more than happy to send some emails, make some phone calls, and anything else possible to get these situations put in the spotlight so that the people causing them cannot continue to hide. Doctors, nurses, and product manufactures do not want negative attention and if they start getting as much of it as they deserve for this situation (and the many other we know must also be happening) their tune should change quickly when they have to be publically accountable. Please let us help you. It would be our pleasure.
Michelle

LISA said...

Leslie,

Back again.

WOW..so many people so eager to help. The problem is..you need help FAST. Kevin is not doing well and no one knows it better than you do.

I would still contact a GOOD legal team and someone who can help you NOW...State to them this is an EMERGENCY, which it truly is.

Right now you need POSITIVE energy and I personally feel that if you make a lot of negative noise..sometimes that doesn't help at all.

Kevin getting out of this urgent crisis that he is presently in is top priority right now.

Is there anything that Moe, Tracy, etc...someone very close to you can do to help you right now to help ? I'm sure that has already been thought of.

You state you feel "trapped" where you are right now...SO..on your next post, why don't you put how you would like ANY of us to try to help.

What you would like any of your bloggers TO DO or what you would prefer any of your bloggers NOT to do ?

I, for one, have done nothing but make suggestions to try and come to the aid of you and Kevin.

It seems a lot of your bloggers are always thinking the same thoughts...regarding Kevin's road to recovery being top priority.

You are the only one who can make these decisions, but it sounds like right now...you need all the help you can get.

I pray today went better and that Kevin is not suffering since the botched surgery.

I would not let ANYONE touch him again as far as surgery is concerned until you speak with the team going to do the work, until you briefly find out these things...What happens to him before the procedure, during the procedure and after the procedure and if the surgical team has completely done ALL of their research BEFORE they touch your child.

It sounds as though time is of the essence in this dire situation.

God Bless you and keep doing as you've been doing. You've got to stay tough. I know it is so easy to give advise..when we are not in your shoes. Please know EVERYONE means well and is trying to do their best to give any help they can.

There are a lot of compassionate people here with hearts who care so deeply about Kevin getting well.

Sometimes I think I should just read your blog daily, sit back and not say a word. Then my heart takes over and realizes that if I DON'T share what I feel...what if what I post could have helped you and I did nothing. It is very hard for me to know what to do.

I don't know how you are doing this..but you MUST keep going for Kevin's sake. You've got him to where he is today..

STAY STRONG.

Holee said...

I mentioned this before. The VA hospital at Durham, NC is next to and associated with Duke University Hospital. They specialize in Neurosurgery.

Kennedy chose Duke as the hospital to operate on his brain turmor. He's doing well and many with a like tumor are dead weeks after the surgery.

I'd contact Kennedy..someway, somehow, even through the news media and request Kevin be seen there and evaluated.

This doesn't mean you have to live there. It means getting the best possible care for Kevin now that they totally messed up in Fl.

Put your stuff in storage or at your cousins house in FL. Many people travel to hospitals for the best care and return home.

I wouldn't want Kevin in ICU there. It looks like the floor nurses care more since they are the ones who got the blood transfusions for him.

Jessica said...

Leslie, I know that you have said before that we respond to what you post and maybe sometimes get the wrong idea. I can't imagine how hard this is for you, but I agree with one of the other posts..start a list of what you "need" and we can all decide what we can help with. I speak for myself and I am sure some others here...I WANT TO HELP, I JUST DON'T KNOW HOW. I am not sure with everything you have going on right now that you know what we can help with, but maybe if you start a list and we can go from there. I feel so useless just reading and typing. :-(


God Bless,

Jessica

Anonymous said...

I've read all these comments and seems to me there is alot of good advice here. First and foremost call the local news and they can do alot of this work for you so that you can concentrate on being with Kevin. I know it's hard to be strong right now and your faith is dwindling, but keep the faith. I truly believe GOD is with you!!!!

scsoldiersangel said...

Praying for healing and strentgh for you and Kevin.

Leslie said...

Leslie, I spoke with Bill Hutton from the Military Order of the Purple Heart and he asked me to give you his email address. He may be able to assist you. His email address is
lasd.ret1 @ yahoo.com
(take out the spaces)
Give Kev a hug for me.
(another) Leslie

Bonnie said...

Leslie,

Regarding the post from "Sue" who left her phone number and recommended you look at private care, she's very knowledgeable about VA care. She has run the same gauntlet as you, knows how the system works. I encourage you to contact her. I realize you are getting advice from all over the country and it's very overwhelming. Sue is a wonderful source, and in fact her son and my son and Kevin all served in the same ABCT. We've followed your story very closely, and feel a kinship with you and Kevin, given our sons service together.

Jessica said...

I've been thinking about Kevin all day praying that his situation has improved. I started an email to the Tampa Tribune newspaper to tell them about Kevin's situation, but then decided to hold off until I found out how today went. As the other Jessica said earlier today, I want to help, but don't really know how. I'm not sure if a newspaper could or would help you and whether it's something you'd want anyway. So I'll wait for your direction.
I hope you're encouraged by all the support you're getting from all the comments today. There are a lot of people who care about Kevin and are praying for him, like my mom's Sunday school class. Stay strong and God bless.

Anonymous said...

I HAVE FELT ALL ALONG THAT THE HOUSE IDEAS WERE JUST HANGING BECAUSE KEVIN WILL BE SOMEWHERE ELSE ... I LIVED MOST MY LIFE IN UTAH AND THE UOU HOSPITAL HANDLES LOTS OF TOUGH MEDICAL ISSUES ... IT IS VERY COLD IN THE WINTER FOR ABOUT 6 WEEKS ... BUT IT IS A GLORIOUS STATE AFTER THAT ... YOU CAN KEEP KEVIN WARM AND ONE DAY HE WILL BE LAUGHUNG AND SKIING DOWN THOSE MOUNTAINS ~

ONLY YOU REALLY KNOWS WHAT YOU WANT FOR YOUR SON ... YOUR HEAD MUST SURELY BE SPINNING ... I AM SURE YOU ARE NOT UP FOR ANY OF OUR ADVISE OR WELL MEANT WISDON ... BUT YOU KNOW THAT YOU "MUST" SET ONE FOOT IN FRONT OF THE OTHER TO GET ANYWHERE ... YOU AND KEVIN HAVE FOUGHT A TOUGH FIGHT AND YOU STILL HAVE AWAYS TO GO ... BUT I KNOW YOU CAN DO IT !!!! KEVIN IS ONE OF OUR HEROES AND YOU ARE THIS HEROES MOM AND REALLY HIS ONLY ADVOCATE ~ YOU WILL MAKE THE BEST DECISION YOU KNOW OF AT THIS MOMENT AND WE WILL ALL HONOR IT ~
I AGREE WITH EVERYTHING EVERYONE HAS SAID ... ESPECIALLY "MISS EM" ... I DO FEAR THAT THE AIRLINES WILL NOT FLY KEVIN AT THIS TIME BECAUSE OF HIS CONDITION AND PRESSURE BUILD UP ON HIS BRAIN ~ BUT THE RIGHT ANSWER WILL COME AND YOU WILL MAKE EVERY EFFORT TO SEE THAT YOUR DEAR SON, OUR HERO GETS THE BEST TREATMENT YOU CAN GET HIM ... MOMS NEVER GIVE UP ... AND KEVIN IS IMPORTANT TO SO MANY PEOPLE ... KEEP TELLING HIM HOW MUCH HE MEANS TO AMERICA ... YOU WILL DO THE RIGHT THING LESLIE ...

Megan said...

Still reading all the time and thinking of you and Kevin (and Breezy). I am sorry things are so tough right now.
Megan

thetwinsdifference said...

Dear Leslie,

Please know that my wife and I are both praying for you, your son, and the rest of the caring individuals that surround you. We can't pretend to know the difficulty of what you are going through, but please know that we are thinking of you, no matter what. God bless you and yours.

Eric Olson

brian said...

I'm so sorry for the ordeal that you and your son are suffering through. I wish there was something I could do to help. Just know that you and your son are in my prayers.

Be well.

-Brian in Columbus, OH

Anonymous said...

hey there les,
i am so sorry you are going through this leslie....
i will try to help you any way i can... if you need someone to search for lawyers or google search and send you links.... just post it on your blog or give an email and i am sure you would have tons of us helping you.....
i'm thinking of you and hoping things will go better tomorrow.... here are a few links i found- i don't know if they will help you with any info right now.
i wish i didn't feel so far away from you, and i'm in florida! i'm sorry for that!
take care of yourself and sending you a hug!!!
mikki


VETERANS' LAW OVERVIEW
http://florida.lawinfo.com/attorney/veterans-law.html

medical malpractice at VA hospitals:
http://injury-law.freeadvice.com/malpractice_law/veterans-medical-malpractice-lawyer.htm

"Free Advice: What shouldn’t a person do if they have been a victim of malpractice with the VA?
Jeff Milman: They shouldn’t put a lot of nasty things in writing. They shouldn’t meet with the claims administrators for the VA and let themselves give recorded statements. They shouldn’t rush off and start marching in front of the facility or contact the press. What they need to do is the three C’s – cool, calm and collected. They shouldn’t put anything in writing that may come back to haunt them, because federal cases come before a judge, not a jury. "

http://www.nvo.org/attorneys.html
attorneys that represent veterans

http://www.nvo.org/medpersonnel.html

http://www.bmhm.com/Florida/Tampa/Military_&_Veterans_Law_Lawyers.html

http://www.bmhm.com/Florida/Military_&_Veterans_Law_Lawyers.html

Annie said...

Dear Leslie;
I've contacted two Senators and two Congressmen, I made sure their offices had your blog. They promised that they would look into your case.
You need the Cavalry right now. We all are pulling for you.
Give 'em hell Leslie

(Don't look Kevin, she's FIERCE MOM) SA Annie

Catherine said...

Hey Les, just wanted to say HEY and sending big hugs your way! Love ya!