Monday, January 12, 2009

Day 226 - Jan 12, 2009

Oh boy. I sure opened a can of worms, didn't I?

First (before moving on to Kevin) I do want to ask that nobody take any action on our behalf. I do realize that some of you already have, and I know that everyone means well, but at this point I need to get through the days the best I can and I can't have the media or a bunch of politicians stepping in and making things even worse. And believe me - they will, no matter how good intentioned their help is. Y'all need to understand that it was my first thought to call the papers and such too, but you have to think about how the hospital is going to react. Yes, I know that Kevin will get the care he needs, but then we will be virtual pariahs and nobody will want to give us a hand for fear of the repercussions. To my way of thinking - the media is a last resort and I have yet to get to that. (but believe me when I say that when I reach that place - I won't hesitate to call EVERYONE!!)

I do honestly believe (after today) that we can work out a plan of action - it just takes talking to the right staff member and using the right words. I also had some of the staff members on my side because they were seeing the things that were going on - that helped immensely. Anyway, I did this today and things are already rolling.

The head doctor of the ward is in DC tonight and he has already discussed Kevin's case with a few neurosurgeons there. He called me on his cell from DC to tell me this. I also sat down with the head neurosurgeon here and had an hour long discussion about our options. He also came in, with the company rep for the shunt, and he, himself, was able to reprogram it on the first try.

He also believes that the reprogramming isn't going to work and Kevin may be going back in for surgery in the morning. To be honest - if that happens - we will discuss it tomorrow instead of tonight. In the meantime, I have asked for this doctor to step in and to keep the young resident away. I don't feel he is capable of handling the situation and we need a more seasoned doctor. He told me that he can't do that, but we shall see about that - this is where one of those 'guns' come out. If I don't have him as our doc by morning, I will be making phone calls.

And I know some of you have talked about legal representation but I was under the impression that active duty soldiers do not have any legal options? My son is still active duty so he doesn't fall under veteran status yet and he is still considered government property. Does anyone know if this is true?

As for us moving to another hospital - there is no time for that. Any neurosurgeons would have to come here and step in. This is one of the reasons I feel trapped. Kevin probably could fly (it would be via the Army - not commercial) but we would have to be leaving in the morning. It's unfortunate that our Fed Recovery Coordinator is at a conference too, so she has not been able to help today.

But anyway, let's give it through tomorrow and see what happens. Maybe his head will shrink back down because the shunt will start working and none of this will matter. I will say that the fluid draining from his ear has almost stopped and that's a great sign.

Ok, I am so exhausted that I keep closing my eyes while thinking of what to say so I need to get to bed. I sure hope everyone understands where I am coming from...

16 comments:

Long-time RN said...

Prayers, thoughts, and stay strong, Leslie. Sounds like care may begin to fall into place tomorrow.

Great news regarding no more CS fluid drainage. My heart breaks for Kevin. He's been on my mind daily, as well as others across the country, since this surgery.

Sounds like some good people at the hospital are in your corner. Take care of yourself and keep fighting.

Alison said...

About time the shunt rep got there! I am so glad he was able to reprogram it. Let's all pray that this works to fix the problem and Kevin won't need another surgery to deal with this drainage issue.

Hopefully within the next few days things start to get in order, care and doctor wise. Thoughts coming your way - get some rest!

Larry Arnone said...

Dear Leslie,

I must apologize as I am a person that believes in action when it comes to the men and women that serve our Nation. I did contact a woman who writes about Afghanistan and our soldiers. I also contacted another woman who is influential in the Wounded Warriors Campaign. As an American and a former Vet, I felt compelled to help out where I could especially after reading your last couple of posts. I must admit that I am ashamed that we are not providing our warriors with better care. I was mad, frustrated and well, just plan pissed off that Kevin is not receiving the care that our Nation is capable of and capable of providing. I will stop trying to contact people I believe can help you until you say too.

I continue to keep your family in my prayers and wish this nightmare somehow goes away.

Respectfully,

Larry Arnone
AKA Bluestardad

LISA said...

Leslie,

That is EXACTLY WHY I said I would NOT to do anything until you let us know in your blog this evening what you'd like us to do...if anything. I could see a lot of chaos possibly coming your way..all by so many good hearted folks attempting to help.

They hear your cries for help and the human reaction is to try to HELP..everyone means well.

I am glad you sat down and are now talking things over with the doctors.

Sounds like a few things may be improving since his surgery. We can only pray so and keep our fingers crossed.

I've never heard of such a thing as your son belonging to the military. I do not have experience with anything like this so I cannot voice my opinion, as others who are in the military I am sure will be able to help in that area.

I remember you telling us about some of the people who work with Kevin at the hospital taking such a liking to him and try to encourage him to keep fighting. You always find out in the end who loves you and who your true friends really are.

Thank you once again "camera man" for sending Leslie the camera. I still smile at seeing Kevin standing and trying so hard to get well. Those photos show how much progress he had made and they made us all so happy to see his smiling face.

I would still contact a medical attorney and simply "ask" a few questions. I would mention to them that Kevin is in the military and tell..in a nutshell...what happened to him last May. The easiest thing would be for them to take a peek at your blog. They can then professionally direct you. With them on your side, they will see that he gets the best medical care and that nothing like this ever happens again.

I have a deviated septum and at times have sinus issues, due to this problem. The pressure from being up in an airplane can feel like your head is going to blow off and your ears are going to explode. The pain is unreal. I cannot even imagine what Kevin's head with all of that fluid and pressure would feel like being up in a plane.

As we've all said, sometimes when you call out for help..people just take it upon themselves to try and help.

That is why I hoped people would read what I put and WAIT...to hear from you tonight. What's to be...will be.

God Bless you and I must say...you sound a little better tonight.

My motto in both personal and business life....Communication is the key to everything !!! I'm glad you're discussing things and finding out ALL info before they touch Kevin again with any surgery.

Good luck tomorrow. Praying for you both. I hope Kevin can sleep through the night...and you too.

STAY STRONG and keep up the good fight. It has gotten your son to the point where he was standing. He can do it again.

I'm sure by the time I am done typing this..others will already have commented. When I started ( and I always take a long time to gather my thoughts ) there were 0 comments.

Holee said...

Leslie is right. Once Kevin signed those papers he became part of the US gov. & that doesn't stop when he is retired. otherwise you would see every vet lawyering up in a suit against uncle Sam. Strength in numbers..like getting relief from agent orange through Congress, but that's about it.

Lets hope morning brings better news. But if I understand this, even if the shunt works, that won't fix the appearance? The Appearance is not from swelling? Meaning his ear will still be lower & plate sunken?

Are we seeing one ray of sunshine? Even after the botched up job, Kevin is still alert & has retained his awearness of everything?

Let's everyone go to the top man here..ask God to watch over Kevin.

Vicki C said...

Oh my... I dont know how you are dong in my friend.. I'm drained just after reading what your days are like. Constantly keeping you and Kevin in my prayers.

Anonymous said...

Leslie, You do what you need to do honey we are all behind you 100%. I read Larry's entry and I am sure he was only tring to help to. I am one that usually acts on impulse so I know how you both feel. I am praying for ya all honey. Please take care(such shallow words I know) I love you all. Pam

Anonymous said...

Leslie,
I'm glad to hear that the rep came and reprogrammed/adjusted the shunt;let's hope it does what's needed so that Kevin doesn't have to return to surgery so soon.
also,glad to hear that some of the staff there is aware of the problems and have step in to help straighten things out.
I see your point about not contacting media,etc.in an attempt to get hospital issues taken care of,but after Kevins health issues are addressed and things calm down it might be nice to contact media that had done previous reports on Kevin and your family just to give them an update on his progress etc.
Many people up north here without a computer have had to get their info from others and would like to get an update.(when things calm down for you guys...)
You are always in my thoughts and prayers,
Kim S

Anonymous said...

Regarding the legal representation question you asked...Check out this site...http://www.nvlsp.org/Information/LSW/index.htm
I tried to read a little of it, and it appears it may be helpful..stating; A project of the National Veterans Legal Services Program (NVLSP) providing free legal representation in disability, discharge and veterans benefits cases to service members and veterans who served in Operation Iraqi Freedom (OIF) or Operation Enduring Freedom (OEF).
Good Luck, and God Bless.
P.S. to find this I went to www.ask.com and typed in Active duty legal representation

Chuck said...

Leslie,

I am a wounded warrior as well. I don't think that you are as informed as you should be on the military medical system, based off what I read in this post.

1. Media and Political pressure is definitely not your first choice here, but do keep it as an option.

2. You, and more importantly, Kevin, have rights as a patient and as his Guardian. Among these rights is the right to the best medical care available. This means that if he needs to go to another, better facility, Walter reed, BAMC, where ever, you have the right to demand the Military Transfer his care there. You, and he, would fly commercial, no one is going to stick him in a military cargo plane to get from A to B. They may, however, if the need is there, opt to transport him in a military medical care plane. These are akin to flying Operating Rooms, and he'd fly with a surgical team assigned to him. Unless he is in critical condition, and if he's stable for transport otherwise, he'll go commercial, with you along as his non-medical attendant. (More on the NMA in a moment.
3. Another right you have is to fire anyone you are not confident in. This means that if you don't think the resident working the case is qualified, or if you just don't like him, you can tell the doctor that you want a second, or even third opinion, and you can always ask that the case be reassigned to another doctor.
4. If you're in a VA hospital, and he's on active duty, you will not get better treatment than at a Major Army Medical Facility. The VA is simply not up to task to care for him as well as Walter Reed, Brook, Tripler, etc. I would definitely work the issue of getting his treatment moved there. These facilities are not perfect, but have worked very hard in the last few years to vastly improve their soldier and family support capabilities.
5. As his non-medical attendant, you have the right to travel alongside him (provided by the government), make his informed consent decisions for him if he's incapable, and will have lodging and meals reimbursed by the government.
6. Kevin, as a military member, cannot sue the Government for malpractice. However, his family members, who are not in the military, can. he can also, one he is out, sue for redress of grievances, including benefits.

Hope this helps shed some light on things,

Chuck

Anonymous said...

Thoughts and prayers are still with you, every step of the way! Sounds like at least action is starting to be taken and we'll keep our fingers crossed all goes well today! Give him a big hug for me!

Liz, SA

Anonymous said...

Leslie,

Here is the number for the legal office at MacDill AFB. Legal Office (813) 828-4422, let them know right away your questions concern a wounded warrior, this should put you at the top of their priority list...

You can also call (800) 984-8523 for the Wounded Warriors Hotline, "We have designed this call center to be able to collectively hear what the Soldiers say about their health care issues, so as issues are raised, we can identify systemic faults or problematic areas and senior leaders can better allocate resources," said Maj. Gen. Sean J. Byrne, commander of U.S. Army Human Resources Command... I know this says "to hear what the soldier says" but you are certainly Kevin's voice...

Finally, do you know who the ombudsman is for the local area? The ombudsman (as outlined in H.R. 1538) ...to such offices with respect to providing assistance to, and answering questions from, covered servicemembers and their families. VA transition issues are not explicitly mentioned. If you don't know this guy please email me, I know the ombudsman here, and I would be happy to work to link you up with one in your area!

Jon G

LISA said...

Leslie,

What will be..will be.

Your blog, I am sure is the easiest way for you to communicate with people. No one is bombarding you and you can read it and respond at your own leisure, if you want to call it "leisure"..

As stated "what will be..will be"...after some people contacted outside help. Possibly your outcry did result in good things to come.

Hope each day is a little better for Kevin and for you.

Recovery is always hard after any surgery. Praying for you not to get overwhelmed and keep a level head. I know we don't help, but hopefully the info that comes to your blog can give you a new direction and offer help that you otherwise would have no way of receiving on your own. Look at it this way, it's saving you time and time of so valuable.

God Bless you, Kevin and Brianna and all of your good hearted blog readers.

Hopefully my initially mentioning contacting an attorney to advise you can still happen. I think he / she would only have your best interest at heart.

Miss Em said...

Leslie,

My comments to you the other day was a list of things that I thought would help you to get organized and I hope a good pep talk. That was all it was suppose to be because I knew you would use what needed to be used.
**I for one would not begin a process of phone calls and e-mails to politicians or the press. That's NOT my place.
**And your right MOST politicians are great about grandstanding and not really doing what needs to be done to help with the problems. **And the press, they are looking for the next great head-line. Although they can be a great way to get thing moving, they can also make things worse.

I am here to give to you all the support that I can and to get my $.o2 worth in on a few suggestions by sending to you an e-mail or 2.
**You keep yelling and I'll keep sending you my ideas. You just pick and choose what you need and file 13 the rest.

I don't mind being on my knees at my Prayer Alter when I believe that it helps Kevin so tonight I will be lighting candles and sending those precious words to His ears.

Go 'Pit-Bull Mom' and do what is best for Kevin. I'll back you 100%.

Miss Em
Austel, Ga.

Anonymous said...

Wow! Lots happening in Kevin's and your life right now.
Hope today was much better.

Hope Kevin did not need more surgery today.

How is Kevin handling all this? Is he eating?

PLEASE tell me he still has a 1 on 1 aid assigned to him!?

On top of worrying and dealing with life threatening health situations for Kevin your having to play politics as well. What a crock!

Prayers that Kevin and you are better today.

Jessica said...

It sounds like things are moving in the right direction and that you have some good people on your side. I hope you were able to talk to the neurosurgeons and get more information. I'm glad that you're not at the point that you need the media or politicians intervening. Glad, too, that I listened to my gut and held off contacting anyone. The last thing I would ever want to do is cause you more grief! You're wise to try to work with the doctors and staff.

I'll be praying for Kevin and for you as you wrangle with the hospital's powers-that-be. Take care!