Tuesday, October 21, 2008

Day 143 - Oct 21, 2008

Boy, I'm real tired of this shunt thing. Unfortunately, Kevin's head is getting bigger so the neurosurgeon will be called for tomorrow morning. I am hoping it's just another gauge issue, but who knows. Luckily it's not affecting him too terribly today. He has been carrying on like normal and he did eat 4 pieces of pizza for dinner so no problems with the appetite.

About the only thing abnormal is the fact that he took a couple of naps today and he didn't want to go to my house for dinner. We did do a CT Scan this afternoon, so he missed nearly all of his therapies, but he did still have speech and that's our favorite, lol.

I really wish that the docs in Texas had placed the shunt in a different area. Where they placed it seems to be causing problems. I guess the gauge can get turned really easily and Kev has been laying on his right side sometimes to change his position and they think that is what caused it to get turned smaller the last time. As an FYI - it is placed down low behind his right ear.

And while I was in the middle of writing this post, Kevin actually got sick and vomited. It was within minutes of him getting his meds, so I am not sure if it was the meds or one of the symptoms from ICP (intracranial pressure - or in other words - the pressure of the CSF buildup against the brain)

I just wish this could all be done with and we could just go home. I really just want everything to go back to the way it was on May 30. I don't want my son to have to go through all of this crap. I don't want my daughter to have to give up her whole life to be here with us. I don't want to have to keep every friggin bit of nursing information and at least 12 different specialists information in my head. I don't want to remember every symptom of every problem we have. Frankly, I don't even want to remember what ICP is. And I don't want to know about burns and skin grafts and bone fragments and hemi-paralysis and H.O. and loss of brain tissue and I could go flippin on and on...

Damn! I hate this stuff and I am apparently having a little pity party tonight. I think I will just sign off now before I depress all of you. Sorry for my little outburst, but I really just want all of this to be over...and I think it's hitting home that it never will be.

26 comments:

Scrapbook Princess said...

Hugs Leslie, you are one special lady.

armyparents said...

You are not having a pitty party at all. If you want to vent you go right ahead we are all here for ya. Your family has been through more that what anyone should be. Kevin is a fighter and that is pretty obvious. He must get that from his mom. Things will get better like it always does. We all wish we could go back to May 30 unfortunately we cannot. All we can do is go forward and enjoy the life that we have and take advantage of every moment. Hang in there (which we all know you will) and remember there have lots of prayers, hugs, and love coming your way. We will always be here for you.
Love
Debbie

Long-time RN said...

Go right ahead and let it out. So very sorry to hear the shunt isn't functioning properly. Lifting Kevin in prayers for healing and positive progress. Take care of yourself, scream at the moon if you need to! And then tomorrow starts another day. You will be strong and do what is needed.
(((Hugs)))

Anonymous said...

Leslie,
Your wouldn't be normal if you didn't long for all of this to be over and desire your old life back for all of you! I know you face Kevin's injury and all that comes with it, with great courage, commitment and love for your son and because of your love for your son. I have seen it in you and am inspired by you. The road ahead will be long and hard, but you are a strong woman. Strong enough to share your total frustration with us and then get back to the task at hand, the mission that has presented itself to you, Kevin and Breezy, in spite of all the frustration. But doesn't it just feel good to let it all out sometimes!
Janet, another wounded warriors mom

Jodi said...

Hi Les,

Sounds like you and Kev had kind of a difficult day today. Hang in there Leslie. Don't give up! Stay strong! You are probably tired of hearing that, but you can't give up. Kevin is alive and there with you. You still have your son. He may not be exactly the same, but he still smiles and laughs with you and eats like a growing young man! :-). You can still touch him and eventually give him a full body hug (if you can't already) and kiss his cheek and hold his hand and go shopping with him and have dinner with him. Give it time. He will be back and closer to "normal" in time. And hey, it's okay to have a "pity party". That is what we are here for! We out here have the shoulders for you to cry on and the ears to listen to you vent. Vent away honey, vent away! I wish there was something I could do to help you thru this. I wish I were there to give you a big hug and a shoulder to lean on!

Trust me, WE ALL wish everything would go back to the way it was on and before May 30th. I wish every day we could go back...I'd give anything if we could go back...

Hang in there Les and Breezy. All of us out here love and support you.

EXTRA healing and positive thoughts for Kevin.
EXTRA strength for Leslie and Breezy.
EXTRA safe thoughts for all military personnel and extra strength to their families.
EXTRA big hugs and all my love to all 3 of you.
Andrew's Aunt Jodi

Alison said...

Don't worry about venting or ranting about the small setbacks. This is your blog and your space and honestly you should feel fine with posting whatever you dang well please. This isn't easy but you are strong and so are Kevin and Breezy and this may never be 'over' but things will get easier.

Lots of hugs and thoughts headed your way tonight.

Alison

Anonymous said...

Leslie,
Take a deep breath cause God is working miracles in Kevin's life. This is a setback that will be fixed. Our prayers are always with you. We need to keep lifting all three of you up to God. He is the Great Healer. Get some rest...remember we are here for you.

Marlene

Jen said...

Leslie,
Hey!! Hang in there girl!! You are doing a wonderful job!! It's ok for you to vent...you have to or you'd explode!! You can't keep all of that emotion inside...it's not good for you or Kevin and Breezy! You are doing a wonderful job!!! Keep your chin up....and vent all you want!! I hope everything goes great tomorrow!!

Jen

Anonymous said...

My thoughts and prayers are with you and your children. I know that it is lame to say that this too will pass. But with God's help I feel that soon this will be a memory of a glitch in his recovery.I agree that you need to vent. You have to express these feelings and move on. You are only human and it helps to get support from others.I met you when you had the video store in East Brady and agree that you and your family are awesome. It is hard, but you will overcome. Maybe things will be not perfect, but they will be better. Hugs from PA and love. Karen

Patricia said...

This is no pity party, this is simply stating the facts. You have every right (as others have said) to vent, scream, cry, rant, or anything else you want to do. Not only is this your blog, but this is your life. And (as everyone else also says) you have amazing strength, Leslie. And the way to survive is to let out the anger, the sadness, the frustration, so it does not get bottled up. So, rant away...so many love you all, we will just love it all away. Hugs, prayers and love. Always.

Vicki C said...

Oh girl.. I'm just really feeling your hurt at this moment. Wish I was closer to be of more support to you. You are always so strong.. if you came here to your blog , (or anywhere for that matter) and did nothing but complain.. I would think that was just fine..because in your position I'm almost afraid that's just what I might do. I wonder often , how you do it day after day. I guess I would just say to you , take a step back .. and breathe.. and think about how damn strong you all have been through this .. and how far Kevin has come. But then I think.. who am I to tell you what to do. I cant begin to imagine how I would handle all that you have been dealt. I'm sure.. not near as well as you have.
Your a pretty amazing mom.. with pretty amazing kids!

Anonymous said...

Go ahead and have a P party! It sort of balances out the rest of our lives.
Lots of hugs and prayers for all of you. (((((o))))) May God give you the grace that you need to deal. ;o)
Catherine

Anonymous said...

May God Almighty give you the strength and fortitude you need to continue to get up when you fall down. May He bless you with precious rest for your body and soul and mind. May He pour His amazing refreshment into you. May He give the doctors wisdom for Kevin's shunt. May He bless you with his abundant love and provision today. Let Him carry you when you're tired . . .
Ruthie

Gretchen said...

Gosh, Les - if anyone's entitled to the occasional pity party, it'd HAVE TO BE YOU! People aren't meant to be positive every second of the day, and you already manage to keep things together better than most people would. Vent away, that's what we're all here for - to hear the highs, the lows, and to help support you along the way. Love and hugs!! Tomorrow is another day! :)

Anonymous said...

Venting is good. It helps get things off our chest. I think all of us agree that the venting would of happened alot sooner for all of us. That's for sure! :)
Thanks so much for all you do there- you and Breezy are great nurses. I think it is harder as you are a nurse to someone you love so much. It isn't easy seeing someone you love have medical problems. I will continue praying for all of you and hope you have a much better day today! :)
"Hugs" to you!
Kathy in Iowa

Jeff said...

Hi Leslie,
As everyone else has said this is your blog. You can rant and rave all you want and if it helps go out at night and scream at the moon.
I'm pasting this quote here and I'm sure you have read it before. In times of trouble I read this and I find comfort in it, I hope it comforts you.


"One Night a man had a dream. He dreamed he was walking along the beach with the Lord. Across the sky flashed scenes from his life. For each scene, he noticed two sets of footprints in the sand; one belonged to him and the other to the Lord.

When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times in his life.

This really bothered him and he questioned the Lord about it. "Lord, you said that once I decided to follow you you'd walk with me all the way, but I have noticed that during the most troublesome times in my life, there is only one set of footprints. I don't understand why when I needed you most you would leave me." The Lord replied, "My precious, precious child, I love you and would never leave you. During your times of trial and suffering when you see only one set of footprints, it was then that I carried you."

Leslie, today will be a better day.
God bless,
Jeff

Anonymous said...

Please know that you are in God's arms and in our thoughts. Vent and vent often. No one would dare criticize you for any frustrations you feel or voice. If they do, we've got your back.

Anonymous said...

Hey Leslie, Your allowed to say how you feel. I don't know how you have done this all anyway. You need to let go and I am sure glad that you have this blog to do it. Take care honey. Love ya, Pam

steve said...

Hello leslie,
I was given your blog by an angel that writes too me. A soldiers angel. My name is PFC Stephen Lober I am deployed in northern Iraq right now. I am a 14 year veteran of the Pittsburgh police dept. and just joined the army 6 Aug 2008. I will be away from my family until 19 April. It's been 7 months now since I've seen my family. I have a grand daughter that was born on 28 Jun. Haven't met her yet. Anyway, I am a Chaplain's assistant here. I would like to ask you if you would be my Pen Pal and write to me so we can help each other out. You son is my hero and I owe it to him to help you keep your amazing strength. You probaly know how to email me.
But anyway it's mcbeththebullmastiff@yahoo.com. Anything I can do for you plaese email me.

God Bless and All my love
PFC Stephen Lober

Anonymous said...

Leslie, you may be doing this, but if not, have you thought about keeping a notebook listing all the items you say you are having trouble remembering? I would never remember all the symptoms, procedures, etc. I would have to keep a notebook to help me remember everything and note the questions I want to ask. I think that might take some of the pressure off of trying to keep all of that info rattling around in my head.

You don't know me, but I have followed your story because of reading Viki Chrisman's blog. Kevin has come so far and you have so much to be thankful for, but I know it must be so overwhelming and tiresome. You all are in my thoughts.

Jessica said...

I don't know what else to say other than you're in my prayers and that it's ok to just let it all out! If you kept all your emotions inside you would explode. That is so frustrating about Kevin's shunt and no wonder you just want to scream. I hope and pray that today goes a little better than yesterday and that the shunt situation is resolved once and for all.

Ben Capella said...

i think after 143 days of this your allowed to have an outburst or 2 when you want be strong.
"NEVER GIVE UP NEVER SURRENDER"

Kris said...

Sending loads of extra Angel Hugs and thoughts and prayers today to you all. Pity party.. are you kidding? You are the strongest woman that I know that I have never met. :-) You too Breezy. Good grief.. please vent all that you need to, "better out than in" my mom always used to say. Of course that was about having gas but I digress, it seems applicable here too :-)

We're all out here praying for you all and praying with you all. Praying so hard for extra strength, peace and comfort for you all. And more. God bless you Kevin, Leslie & Breezy and giant hugs are coming your way right now. I so wish that we could just stop the ride and let you all off.

- Kris, a Soldiers' Angel from RI

Anonymous said...

SERENITY PRAYER
GOD GRANT ME THE SERENITY TO ACCEPT
THE THINGS I CANNOT CHANGE;
COURAGE TO CHANGE THE THINGS
I CAN;
AND WISDOM TO KNOW THE DIFFERENCE.
AMEN

Hang in there. We're all thinking of you all. Barbara

The Rock said...

No, Leslie I don't think it was a pity party.
Just a normal human reaction . You have every right to feel like that ! Don't feel bad when you get down sometimes. It helps, when you can just write it all down. You ARE a Mother and a Mother always wants her children to be fine !
Your family made many Sacrifices and will always be in my Prayers !
God bless you
Petra
S. Angel
The Rock

Anonymous said...

hey this is quimby i went to bacic with kamm tell him i said hi and that i got my e-4 and hes lookin great and glad hes eating good agin sounds like hes eatin almost as much as he did on our over night passes lol talk to later
Spc.Quimby