Saturday, January 10, 2009

Day 224 - Jan 10, 2009

What a mess. Y'all can't imagine the feelings that both Kevin and I are feeling. Today has really been a terrible day.

First, it turns out that the surgery did not correct the fluid problem - at least not at this shunts flow rate. When I went in this morning, Kevin's head was quite huge again - ON TOP OF THE FLAP!! I was under the impression that no liquid would be able to escape and the flap would keep it all inside forcing the shunt to work. Obviously that's not the case. His whole face is even swollen with fluid.

Second, although the shunt is programmable - NO ONE HERE KNOWS HOW TO WORK THE FLIPPING THING!!!! Literally! The doc and a company representative tried twice today to reprogram it to a larger flow rate and it won't work. I overheard them saying that they had texted a supervisory rep and they may have to have that person fly here to show them how to work it. In the meantime, Kevin has had multiple x-rays of the shunt in the hopes that they can figure it out by looking at the films.

The docs also released us to go back upstairs to our normal room and I am so glad because...NO ONE IN ICU NOTICED THAT KEVIN NEEDED BLOOD!!! When we got back upstairs, our normal nurse was looking at his labs and called the doc immediately. The transfusion is currently on it's second unit of blood. I kept questioning all night last night why his vitals were up, but I was ignored. It turns out they were an important sign for low hemoglobin. I wish I had talked louder last night.

Needless to say, Kevin has been crying all day. He realizes that the surgery didn't fix the problems and has only created new ones. I have tried to pull his spirits up, but it's hard to when I feel the same way. He did have me lay in bed with him this afternoon and we just held each other and cried for a long time. But then, we stopped and I told him that yes, everything pretty much sucks right now, but that there is a reason he is still alive after everything he has been through. I told him that we are going to fight all these issues and then kick butt to go the hell home. He agreed, but we will just have to see if things start working out or not. If they don't, I really worry that he will give up. I have felt him wanting to all day, even after our 'talk'.

This is just so damn hard. For both of us...

26 comments:

Brenda Armstrong Clarion PA said...

Leslie...you and Kevin will be in my prayers...just remember Gof is Good...ALL the time!! Trust in Him with all your heart and He will give you and Kevin and Breezy the strength to get through this.

Take Care

Brenda Armstrong said...

Sorry...I meant to type GOD is good all the time!

You are in my prayers

Jessica said...

First, thank God Kevin came through the surgery all right. But I feel sick over the fact that it was not done the way you thought it would be, the way it SHOULD have been done. It's just not fair to Kevin and I can only imagine his disappointment. And that no one can work the shunt is just pathetic, absolutely pathetic.

I will certainly pray that Kevin's representative will get things moving in the right direction ASAP. In the meantime, I'll be praying for God to give you and Kevin some extra doses of strength and grace. I agree that there is certainly a reason that Kevin is still alive, so I truly hope he doesn't give up. Who knows how many people he is inspiring right now because of his determination and spirit. My heart just goes out to him and I'd like to fly down there and slap those docs around and see how THEY like having a swollen head.

Stay strong and keep after these people to make it right. You've got a lot of support out here and I'd be glad to make any phone calls or write any letters to gov't bigshots if it would help. Praying for you!

armyparents said...

Les and Kevin I am so very sorry that you have to go through this. There is a reason why Kevin is still here and that is because he is a fighter and God has a plan on earth for him. He just has to keep fighting. I wish he only knew how many lifes he has touched and inspiration he gives all of us.

Les no one would blame you if you started kicking some butts there. I honestly cannot understand those people and these are the ones that are caring for our military.

I guess all we can do is keep praying that things will get better and they will.
sending prayers and hugs
debbie

LISA said...

Leslie,

Once again, I am so sorry all of this is happening.

It truly sounds like you need legal advice. Someone needs to be looking out for you and Kevin right now, as it seems as though the seriousness of the surgery he was about to have, was not completely thought through, before the procedure was begun. This is a life we are talking about..

It sounds as though the doctors and the surgery made him worse than before he had this procedure done. I can't believe they did not research this BEFORE they did this to Kevin.

I don't want you to be more upset, but I would contact someone soon. Kevin needs good medical help A.S.A.P.

Please pray, as we all have been doing. You are so right, as you have told Kevin, there is a reason he is still alive. His purpose on this Earth is not yet complete.

Keep fighting Kevin and please don't give up.

STAY STRONG, Leslie. My heart breaks for you all.

Trace Geworsky said...

Hi leslie,
I have been following your blog/story from the beginning, and have never left a comment, but after reading your entry tonight and bawling like a baby, I figured it was time.
I am soo sorry that your family has to go through this. I have lost 5 babies during pregnancy, but after now having a healthy 5 year old son, I dont know how I would have the strength that you do...You are an amazing woman, and Kevin is so incredibly lucky to have a kick a** Mom like you.
Keep your spirits up, get someone to represent you legally(cuz it sounds like an un necessary mess) and get the hell outta there once Kevin is doing better.
p.s. No matter what Kevin's head looks like, I still think he is extremely handsome. He sounds like a wonderful guy, and If I wasnt 30, single with a son, and in Canada, he might have to watch out:):):)
Take care
Trace G

Anonymous said...

I'm so sorry that you had a bad day. I pray that tomorrow will be a much better day and the shunt will work properly. We've already seen how you are fighters through all of this. I know you will get through this too. Have they considered taking this flap out at all? Maybe it's too soon to know. Again, I hope the fluid gets regulated by someone who knows more about it and soon.
We continue to pray for all of you!
HUGS to you!
Kathy in Iowa

LISA said...

Leslie,

The ONLY reason I mention contacting legal help is because you have enough on your plate looking out for Kevin's care and trying to get yourselves through each day.

If you got legal advice, they could be doing all of this for you in making sure you got the best medical care possible.

I just wanted to make sure you knew why I suggested getting legal advice. This would greatly lift your load and you could concentrate more on Kevin and not have this other stuff to worry about. They could do that for you..after you share with them.

Praying that Kevin gets some relief soon. The poor guy has been through so much and the progress he has made so far is unreal.

This roller coaster ride you're on and yet another set back...the only way you can go is up and to improve.

God Bless you both and hope tonight is better than last night. Say a prayer.

Alison said...

Kevin is alive. Even in the face of everything, these stupid setbacks and problems, he is alive and he is going to get better. These problems will be fixed, even if it takes more work. Such setbacks are SUCH a pain in the ass and it makes me so mad that the procedures did not do what they are supposed to do.

Yes, every patient is different and every procedure is different. But this is just ridiculous, not knowing how to work the shunt?! They should have thought of that BEFORE the surgery. What a...I don't even have words to say what I want to say.

I hope that things get resolved SOON and that your friends like Mary the rep can get better answers to help Kevin the way he needs.

Grateful that you are out of ICU, and more thoughts and prayers coming your way.

The Rock said...

Leslie, that is just terrible ! But try to concentrate on the important part : Kevin is alive !
I would probably feel the same way and would be upset too.
You guys are always on my Mind because you are so brave to go through what you have to go through !
My heart hurts for you Leslie, because I am a Mother too.
And I pray that tomorrow will be better!
Hang in there, Leslie. It is just all such a stressful thing to have to go through. I wish I could make it all better !
Hugs !
Petra
Louisiana

Long-time RN said...

So very sorry you and Kevin have to face this setback. I wish all of us out here could somehow transfer strength and hope to Kevin. Both of you are lifted in prayers as the fight continues.

Anonymous said...

when i see thing looking better for you im happy for you but when i see things not being so good i start to cry and it hurts me what your going through but i will cry for both of you love ya Albie

Vicki C said...

I'm just so sad and upset for you right now.. I could cry. I wish there was something I could do for you friend. I wish I knew the right words. I wish I could just make it all better for you and Kevin.... I sure would if I could. I just pray things start looking up for you soon. Enough is enough.
Praying for a better day tomorrow!

Gretchen said...

Leslie, you and Kevin are in my thoughts and prayers. I'm heartbroken for you two - I just pray that some good news is on the horizon.

Pat said...

Leslie, I am so sorry that the surgery has not turned out as hoped! How difficult for Kevin and you! I am lifting you both in prayer! Remember, when you are at the end of your rope, reach out and grab the hem of God's Robe!

Anonymous said...

Leslie,

There are no words! I know you and Kevin will find the strength to keep going forward. You have a lot of people praying and pulling for you two. Better days are coming! You and Kevin CAN AND WILL, get through this. I love you and keep you in my prayers.
jennifer

Anonymous said...

You're right, Leslie...you're going to kick butt, and then get home. Keep that attitude and you can do anything. Hugs to you and Kev always. You're in my prayers!

Liz, SA

Anonymous said...

Leslie,
Theres not much to say that hasn't been already said by others....
You,Kevin and Breezy continue to be in our prayers and in the prayers of so many others.As hard as it seems to be at times;remember
God is Good and he will give you nothing that he doesn't think you can handle.
Think back to day one and then look at all the progress Kevin has made,all the strength you found in yourself,and all the love that others feel for your family.
You can do it and Kevin can do it too with the support of his biggest fan...YOU !!!
GOD BLESS YOU ALL
Kim S

Anonymous said...

Leslie; I am apalled at the treatment Kevin is getting there. I suggest that everyone contact their legislators in Washington, I have, they're easily found on Google, they all have email addresses. This is an outrage!
I forward your blog to everyone, they are all going to contact their representatives.
The sub standard care that our heroes receive has to be stopped...NOW.
Stand tall, we're all thinking of you and Kevin every day.
Annie

Patricia said...

Leslie ~ Everything has been said, but I wanted you just to know you are in my thoughts, prayers and heart. Always.

Anonymous said...

Hi Honey, I am so sorry that it is not what you and Kev expected and also glad for Mary. I can't express how you must feel and I know that the surgery went well but I know what heart ache and disappoint when it was not what you were expecting. I am going to try to call again this evening. I know you are busy and exhusted Les so if you don't feel like talking I understand and we will connect when you feel like it. Remember I love you guys. Love ya, Pam

Anonymous said...

My name is Sue and I wrote to you a while back about my experience with my son who was wounded last November. I was not happy with the decisions at Walter Reed regarding my son's care and got a private opinion. I ended up arranging my son's surgery with a private surgeon in NYC. The Army paid for it in full along with my being with him. I had to do the legwork but the Army never told me "no". Please realize that you have this right and even though you are overwhelmed, you may want to consider a opinion outside the Army and VA system. Look for the best in the world, I did. My experience was that private practioners are very willing to cooperate with Tricare as they are grateful for our sons service. If you want to talk please call 440-415-3852

BrandyWilliams said...

I'm a friend of Kevin's from highschool and used to watch him skate in Brady and cause his humorous ruckuss all the time. I've never left a comment to your blog but have read it everyday. I was so hoping the surgery would fix everything for him so he could go back to being the awesome person he once was. I'm so sorry that it didn't happen. I know it's hard to understand but God does things in our lives for a reason and we just have to pray and trust that what is going on right now is for a reason. I sincerely hope things change for Kevin and your whole family very soon. My boyfriend and I pray for Kevin's recovery everynight in our prayers with our son before bed. Keep strong and keep being the kick ass mom you've been Leslie and that will get Kevin through anything!

Much love,prayers, and wishes for Kevin and your family!

Jodi said...

Les, oh wow, I am almost speechless. I had such high hopes the surgery would go well. I am so sorry you guys are going thru this horrible situation. Do what you must do to make it right, and don't worry about anyone else. Tell every General in the Army off if you have to get Kevin the help he deserves!! This is bullsh*t!

Please stay strong, believe in yourself, don't be afraid, and do what you have to do to make this right!! Please know that all of us out here support and love you all and will do whatever we can to help you. I wish I were there. Not that I would be of much help, but just to be there and give you and Kev and Breezy a big hug and shoulders to lean and cry on.

Please Les, hang in there. You 3 have made it this far and you will continue to fight the fight and survive. You are amazing people and your love for one another will pull you thru this rough time.

Strength, healing and positive thoughts for Kevin.
Strength and comfort for Leslie and Breezy.
Safe thoughts for all military personnel and strength for their families.
BIG HUGS AND ALL MY LOVE TO YOU ALL!
Andrew's Aunt Jodi

P.S. - Thank you for everyone's prayers and well wishes on my surgery. All is good.

Anonymous said...

Leslie and Kevin ~ I have been following your story since Veteran's Day and Lisa mentioned you on her blog.

I just want to say how sorry I am that the surgery didn't get the results that so many of us wanted for you.

You both deserve that. Keep up the fight and know that you story is opening up a lot to think about for so many of us.

God Bless You!

~ Jodi in Oregon

Tina/Chieu Hoi Veteran Ministry said...

Please know that Kevin is
in our prayers, and you too. We are a small Veteran Ministry in the Tampa Bay area... please
contact us through our church, River of Life Christian Center. Their phone number is 677-4453.
Please explain that we want
to help anyway that we can, and leave a phone number or a way for us to contact you directly.
We are praying!
God Bless and continue to give strength.
Tina
Chieu Hoi Veteran Ministry