Before I really get rolling on this post, I want to point out that I was in no way angry at anyone for voicing their opinions to me the other night. I also don't want anyone singled out as lecturing me or anything because I honestly do believe that everyone has our own best interest at heart, it's just that people THINK we should be cracking up and when we get mouthy they assume it's finally happening.
But anyway, Kevin pretty much slept all day today as his head is even larger. The neurosurgeons can't seem to get all the fluid to come out of the shunt so more and more is being left behind to swell his head. I mentioned a compression wrap of sorts to be worn around his head and the doctor shunned the idea the other day, but I guess they are going to apply one tomorrow after all. Maybe I missed my calling, huh? NOT!
I did meet with the realtor today and we put a bid in on the house that Kev fell in love with. It's very expensive (to this Western PA girl) and I can't go much higher than what we bid so hopefully the bank will consider it. We talk about this house every day while Kevin's head is being tapped so I really hope it works out. This is the only topic I can use to get Kevin to focus on something other than the pain for a minute or so every now and again.
You guys just can't imagine what it's like to hold him while they drain him. First, they stick the needle into his head (with no pain killers of any kind) and then they suck the fluid out. It has been taking about 45 minutes each day and believe me - he screams and sobs and it is horrible. And the whole time I have to hold his head up off the bed to keep it sterile and tell him to focus on me and listen to me softly talk about the house or anything I can think of. It is one of the top ten hardest things I have ever had to do so far.
Anyway, I did tell you guys that I was going to go over some of the things that have been going on here, but it's going to have to wait. I am just too tired to think of all the bad things tonight. I will try tomorrow, but there are no guarantees.
I do want to say one thing though - a few of you have mentioned that you didn't think it was a good idea for us to go home due to the 'what ifs'. I am not sure what you think is right? Do you want us to stay in the hospital for the rest of his life? I mean, there are what ifs every single day. FOR ALL OF US!!! I can tell you that we will not live in fear of all of life's bad possibilities - if we do we will miss all of the good ones. I am not saying we are just going to cruise through life without a care in the world, I am just saying that I can't worry about having to hit the brakes or if I should fall down the stairs or anything that can happen to any one of us. This is not going to be too much different than taking home a newborn baby - remember how we all worried about all of those things? But did it stop us from living our lives? Nope.
As for the possibility that we will have future problems with his head/shunt? That's pretty much a guarantee. Forever. It's something that I am already aware of and that I have accepted. It doesn't make it easy, but it's just the way it is. And who knows...maybe we will be lucky and he won't really need the shunt to work after his cranioplasty...but then again - we may need it for the next 50 years too. And in that case - it will be replaced numerous times and I will just have to be on top of my game every single minute of every single day.
No problem, right?
First 2 from the Nov kit!
11 years ago
11 comments:
Hi hon,
I think what you're doing is remarkable..AS far as taking Kevin home, I have to agree with you..We're not guaranteed how are lives are going to..Only you Kevin and Breezy are able to know what you can or cannot handle..
Will it be easy on you, hell no..I know because I've been there..not maybe to the extreme that you're going through but with my mother who was confined to a wheelchair, blind and could not do for herself at all..I was told to " stick" her in a nursing home, to get a life, to " let nature take it's course" but that was something I could not do..So I worked everyday and had a wonderful boss who let me bring my mother to work everyday and work around taking care of her..
Do I regret it..not one minute..Your road ahead is going to be rough and there will be days when you'll want to cuss out the world and everybody around it..doctors & nurses included..but YOU know what's best and YOU know how much you can handle..and trust me when those times happen and happen they will..do like I did, find yourself one of those punching bags and beat the crap out of it..It really does help..
If you thinking that you're loosing it, then you're not..you're only being human and most importantly you're being a mother..I really wish I could say that things will change but only God can tell you that..The only thing I can tell you is this..do YOUR best, not only for Kevin but for you and Breezy..Don't let people get you down( you always have us) and always, always remember that there is light at the end of the road..Sometimes it may be a bit dimmer then others but it's always there..
WE all love you all and are here when you need us..just hang in there hon..
Brenda
I can't imagine how hard it is for you to deal with having to hold Kevin still while they drain the fluid from his head. Especially with no painkillers...augh. Not a good situation at all. I'm glad you've found a way that works to distract him a bit.
I'm really hoping and praying that the house comes through and the bank works with you all to make this happen.
You are right about the 'what ifs' and it being like a newborn baby...guess with Kevin being such a fighter I've never looked at it that way before since I don't see him as helpless, especially with how far he's come. Things will get better once there is a routine and all that.
Even though you shouldn't have to be doing all the work of some of the nurses when they are shortstaffed, I guess at least you're learning, so maybe that will make dealing with the 'what if' moments easier when they come up.
Lots of good thoughts coming your way.
Leslie, you do what you think is right. To heck with what others think. I have great admiration for you. You should receive the Purple Heart. We are praying for you and Kevin. Jude
Leslie,
All I can say is that who are we to judge you or your decisions?I am
not spending countless hours in a hospital holding my son as he screams out in pain.I am not the one who has to worry about bids on houses and where we will live.I do not have to constantly keep alert to every going on in a hospital to ensure the safety and well-being of my child;all while trying to be there for my daughter too.
Who I am is this...someone who cares,who cheers when something good happens there and who cries when things turn bad.I am someone who thanks you for your blog,for
your openness and honesty,for allowing us into your private life.
Do what you know is best for you three,say what is in your heart and remember this...it's your blog if someone is offended by it they have the ability to turn off their computer with the push of a button.
It's not that easy for you.
With that I will say,keep on doing what you are doing and I am praying for positive changes for Kev.
Kim S
Hey, YOU'RE THE MOM! *Smile* I have to hope that once the crani whatever its called is done thngs will smooth out eventually. I say this because I know this old guy who had a shunt put in adn he had terrible headaches at first but they got it leveled out and he no longer has to walk witha cane adn no longer has balance issues fromt he fluid collecting in his skull. I knwo I know this is a LOT different but I have to believe with so many head injuries in the world that what they are trying to accomplish with Kevin has been accomplished before. Eventually you might have to go to a pain management clinic but whatever helps right.
LIke I began with, you are the Mom. I totally agree with you taking Kevin home ASAP physically. I am hopeful(having read all your posts that he will do much better then even you expect once the head is adjusted. I mean come on you know it has to be hard to know your head is not shaped like it everyone elses and I know you have talked about people starring. I think you are doing a great job. Even if people stare for heavens sake he is a HERO!! I say put a banner across his chair! Print out Soldiers Angels cards and AnySoldier.com cards and hand them out when people stare! I know thats just one more thing on a pile of stuff already.
But I did want to voice my support for all you are doing; I think you've got all the right moves, Mom!
Martha Windle
Soldiers Angel
Hi Les,
I support you in all the decisions you make for your family. You are an amazingly strong woman, and you have done it right so far, and will continue to do so. Keep faith in yourself....
Good luck on getting the house!
Kev, hang in there kiddo! Keep fighting! So sorry about the pain, but you are strong and you can make it thru.
Hang in there family! I love you all and you are an amazing family!
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 ALL OF YOU!!!!!!!!!!!!!
Andrew's Aunt Jodi
Just wanted to let you know a second package was sent to Kevin from some real nice military wood carvers. They have carved Santa's for Kevin and a Santa bottle cork for his first party. I hope they find their way to his new room along with the first box.
Hi Leslie, can I tell you that you are one incredible person? Boy I'd love to meet you and shake your hand some day. Just wanted to say that.
Thoughts, prayers, support and load upon load of angel hugs are always on their way to you all. And extra amounts of each.
Good luck on the bid, I've got my fingers, toes and anything else that crosses crossed that they take it!
HUGS!!
- Kris, a Soldiers' Angel from RI
You're right, I can't imagine how awful it must be to hold your son's head while he's in so much pain! And they can't use any painkillers? How horrible. I'm so glad that you're there for him and that you have so much determination to do what's best for him. I'll keep praying that the doctors would get this fluid problem under control ASAP! And prayers for you and Breezy, too, for strength, encouragement, and peace. And that house! :)
Hi Leslie. I haven't posted in a while, but want you to know that I continue to follow your journey through your blog. I'm glad you have this outlet to use when you need to vent. My prayers continue to be with you, Kevin, Breezy, and the hospital staff, every day. You all three still amaze me with your strength and determination.
I agree with others who have said that no one knows him better than you, his mother. That's our jobs as mothers - to be there for our children - for as long as they need us.
I am so hopeful that the bank will accept your offer for the house. It seems to be something that Kevin enjoys looking forward to.
Love and Hugs
Valerie
Hi, Leslie
Just want to wish you a good day ! And I am hoping that you get the house . It will give all of you some
" Normalcy " .
They should give Kevin something for pain before they drain him ! He shouldn't have to suffer like that .
Keep your Chin up !
Hugs
Petra
Soldiers Angel
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