Kevin Kammerdeiner, the story of a Wounded Warrior.

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Chalkperson
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News about Kevin CMG's Wounded Warrior...

Post by Chalkperson » Wed Apr 14, 2010 9:05 am

WEDNESDAY, APRIL 14, 2010
Day 684 - Apr 13, 2010

Unbelievable! Kevin did fantastic today on the drive to the apartment!!! I was so scared because when I got to the hospital he was so sick. He was sitting in the dark with his puke bowl on his stomach and I was so sure we weren't going. But we gave him some under-the-tongue nausea medication and within a half hour he was raring to go.

So we loaded him up and away we went. Before we left, we also gave him some anti-vertigo meds and some pain pills and he had no issues whatsoever. I have to admit that I was really surprised.

And another thing that really surprised me is that the TBI doctor and therapists from the VA here in SA are going to make a house call on Thursday. Yep - they are coming to our home to visit with Kevin and get to see what he's like in his own environment. They wanted to originally keep us in the hospital another day and meet us there, but they changed their minds and felt it would be best to see him at home.

I am also happy to say that the bed and rails were brought over and installed today. Kevin was not too happy to see the hospital bed in his room, but he must sleep with his head elevated so it's something he will have to adjust to. I don't think he remembers that it hurt him to lay in the normal bed at the FH.

So tomorrow - we get to go home! Yay!!!
Last edited by Chalkperson on Mon Apr 19, 2010 9:58 am, edited 1 time in total.
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Re: Kevin gets to meet Joe Biden...new photos...

Post by Chalkperson » Fri Apr 16, 2010 10:24 am

FRIDAY, APRIL 16, 2010
Day 686 - Apr 15, 2010

So yesterday was a bit rough. Kevin never really does well with change and he fought against everything at the apartment. Nothing was right as far as he was concerned. It really was a horrendous night and I am so glad that it's over.

Today was much better. Once he gave it a chance, he saw that things are not as bad as he thought. Granted, the bed they brought really isn't going to work, but he has no choice but to sleep in it until a replacement can be brought. And he really is seeing that it's nice to be able to sleep without constant interruptions and to just get back to being more independent.

As for the doctor, the therapist and the case managers that came today - I was very impressed. They really looked over the apartment and gave me some insight into things with TBI patients and they also discussed possible therapies and other services available to Kevin. I really liked each and every one of them and felt that we will have a good 'working' relationship.

And Kevin decided tonight that we were going to the mall. I had planned to stay in as it was his first day home and it was rainy and yucky out there. But he was adamant that we go shopping to buy a belt (his old one won't go around his waist anymore). So we loaded up and headed 4 miles down the road to the mall. He did fantastic. He picked out some new clothes, sunglasses, a hat and a wallet at Pac-Sun. It was just so nice to do 'normal' things with him again. And he did so well in the car - even listening to the dreaded screamo music.

I really needed to run to Walmart after the mall for milk and things, but I could tell Kevin was getting too tired so we just went home. Not surprisingly, he went to bed immediately for a little nap.

After that, he just organized his closet. I am not buying dressers, we are totally using our closets for everything and since he has to have everything in it's proper place, he spent some time getting it just right. I noticed he also hooked up his XBox.

It's amazing when you think about it, isn't it? The kid almost completely understands what's going on around him and he can do so many things we never thought he'd be able to do. I told the docs today that I expect Kevin to be somewhere in the 90 percentile recovered when this is all over. It's going to be years down the road, and it's going to be a rough road too, but I do feel he can pretty much be his old self someday. He's already made great strides toward that goal...

And I am going to leave you with two photos from the other day. The first is me and Martiza and the second is Kevin doing rabbit ears to one of the therapists. I don't think she ever knew that he was doing it. It was so funny!
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Re: Kevin gets to meet Joe Biden...new photos...

Post by Chalkperson » Sat Apr 17, 2010 12:09 pm

SATURDAY, APRIL 17, 2010
Day 687 - Apr 16, 2010

There isn't a whole lot to talk about today. About the only thing we did was go to Target for some groceries and then I just built a tv stand and put together the vacuum cleaner. Pretty exciting, huh? LOL.

I do want to say 'what a relief that we aren't home-bound though, huh?'. Man, was I scared about that possibility.

So I am just going to answer some of the questions that I haven't gotten to in a while.

GrannieEv - thanks for the info on the Lions Clubs. I had never even thought of that. Lucky for us, the VA did bring him a bed and after the docs came the other day they are even sending a better/bigger one.

Karen - I am anxious to try that Kettle Corn recipe. I am trying to decide on using ghee or oil though. Just never heard of ghee before...

Anita - yes, Kevin listened to screamo before he left for the Army. His favorite band even back then was Atreyu - totally can't understand a word they say, lol.

Jenna, thanks for the info about hyperbaric treatments. Unfortunately, Kevin would never lay in one of those chambers for an hour or more. I am anxious to keep researching it though. It's still so new and you never know what they will find and about the only thing I can say is that you never know what Kevin will do years from now. He has really just come so far, but if he thinks something is weird, he's just not going to do it.

If I have missed any questions, please re-post them. I have them all cleared out of my inbox, but sometimes I delete by accident.
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Re: Kevin gets to meet Joe Biden...new photos...

Post by HoustonDavid » Sat Apr 17, 2010 4:07 pm

Chalkperson wrote:we must never forget their sacrifice...
You are sooooo right Chalkie. It is wonderful Kevin is out of the hospital and with his mom,
hopefully it will work out. San Antonio is a nice city, I hope they can get out once in a while.
"May You be born in interesting (maybe confusing?) times" - Chinese Proverb (or Curse)

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Re: Kevin gets to meet Joe Biden...new photos...

Post by Chalkperson » Mon Apr 19, 2010 9:58 am

MONDAY, APRIL 19, 2010
Day 689 - Apr 18, 2010

Unbelievably, Kevin has been sitting in the living room all night watching tv/movies. We sat and watched Horton Hears A Who, then Rat Race (a fav or ours) and now he is flipping channels. Actually, it appears we have landed on The Mighty Ducks.

So we didn't really do anything today. We never left the house, both of us just vegging around. It was a really nice day so I turned off the air and threw all the windows up. I made some chocolate chip cookies for dessert and Kevin is munching on those right now.

I did want to mention something. A few of you were surprised that Kevin could hook his XBox up so I figured I needed to clarify that Kevin pretty much knows what's going on around him at all times. He knows how to run every electronic device out there, he knows how to get around the stores by himself and also how to pay for things using his debit card. We are making great strides in the talking department and he was able to tell me where he was in Target the other day when I called him (sorta, lol. He told me 'bananas' so I went to the front where the fruit was, but he was actually in the freezer aisle that had a picture of bananas on the endcap. It's a start though, right?). So he showers himself and does everything - the only thing I have to do is help him with his deodorant. He understands what he wants AND what he doesn't. He knows his meds better than anyone - not the names of them - but the pills and the doses. He is reading more and more and he can do addition and subtraction very easily (even large numbers). He knows almost every movie within three seconds of viewing it and often uses them to communicate things that I just can't understand the normal way (charades). All in all, he has really come a LONG way cognitively in the last six months or so.

This is not to say that he is recovered by any means. We have many more years of therapy ahead of us, but he really has made wonderful improvements.

And to wrap things up, Miss Em - you asked about my parents and they are doing well. Dad is getting stronger every day and will be starting another round of chemo shortly. I don't know if I mentioned it, but they moved into our home in FL so that it doesn't stay empty for a year. It's already been empty so much over the last year and I hated to leave it that way. It will also help us cover the expense of running two homes.

And Mel - I will tell Maritza 'hi' next time I see her! Should be this week one day.

And for those grapeseed oil users - can you buy it anywhere or only in specialty shops?
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Re: Kevin gets to meet Joe Biden...new photos...

Post by Chalkperson » Tue Apr 20, 2010 9:33 am

TUESDAY, APRIL 20, 2010
Day 690 - Apr 19, 2010

Up until today I have felt this apartment was just perfect for us. But today? TODAY - the elevator malfunctioned!!! Now let me tell you that our apartment is on the fourth floor and you guessed it - Kevin had to walk up all four flights of stairs! I am spitting nails!

First let me preface this by saying that we had went to the movies today to see Alice in Wonderland and Kevin did pretty well until the end. I think it was just because he was sitting for so long, but regardless - he was hurting pretty bad by the time it was over.

So we headed home, but he was so nauseous that we had to keep stopping and it was all I could do to get him out of the car and into his wheelchair to come up to the apartment. Then we get into the elevator area and Kevin hit the button and nothing. So he hit it again and still nothing. We waited, thinking maybe someone was holding it, but really, it just wasn't moving at all.

Now you had to know that I got on the phone and called maintenance, but I had to leave a message and by then people were walking past us and everyone was telling us that it was broken down. In about five or ten minutes someone from the apartment complex called me back and told me that they were sending someone to help get him upstairs, but no one ever came.

It took Kevin AN HOUR to climb those four flights of stairs. He had to rest 10-20 minutes in between each flight and he was so sick by the time we got to our apartment! I AM LIVID!!!

Worse - I was informed that the elevators have broken down four times in the last six/seven months and the one time it was 13 days before it was fixed! Say WHAT?!!

Don't you think that the office people would have told me that knowing Kevin was in a wheelchair and sick?

I am furious! I can't even begin to tell you how mad I am. Why wouldn't they tell me? And now what am I going to do? Are we supposed to stay here risking Kevin having to do this gosh knows how many times over the next year? I already looked all night at houses for rent and once again - there just isn't much out there that fulfills all of his needs. And frankly, I am just too damn tired to move all this stuff by myself again.

Man, I am really PISSED OFF! Kevin has a doctor's appointment tomorrow and I don't know whether to cancel it now or wait and see what tomorrow brings. Especially because I am wound so tight I probably won't sleep a wink. It's already almost 3am and I am still blowing steam from my ears!

Geez! Why can't something - just one flippin' little thing - go right for once?
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Re: Kevin gets to meet Joe Biden...new photos...

Post by Chalkperson » Wed Apr 21, 2010 8:46 am

WEDNESDAY, APRIL 21, 2010
Day 691 - Apr 20, 2010

The elevator was fixed by the time we got up this morning, but I still called to set up a 'contingency' plan. I really liked the idea that if the thing is broken, we can stay at a local hotel because there is absolutely no way that Kevin is going to HAVE to walk up those four flights of stairs again.

Unfortunately, the manager didn't return my call today. I am giving her a couple of days because who knows...maybe she's off sick or something, but if nothing is done by Thursday or Friday, I will most certainly call that advocacy group.

So we did have a doctor's appointment and we did go and all is well with Kevin. We are going to keep playing with his meds trying to get his pain more managed and also trying to eliminate the amount of pills he still takes every day. We have to do it slow though so time will tell.

And we did visit the ward today too. We miss everyone. It's like living with a bunch of people and then moving away (which I guess really is what we did, lol). It was funny because Kevin went right to his room (he has almost always been in 403) and was shocked that someone else was in there. I think he thought it would be saved for him, hehe.

And that's really about it for today. Breezy came over for dinner. We hadn't seen her in probably a week because she has had the flu. I was pretty shocked when she walked in because she lost a lot of weight in the last week and it alarmed me. She's on the mend though and it was really nice to see her.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Apr 22, 2010 2:04 pm

THURSDAY, APRIL 22, 2010
Day 692 - Apr 21, 2010

We had a pretty good day today. We didn't go anywhere, but we invited Mary, our wonderful FRC, over for dinner and it was a really nice evening. Kevin enjoys seeing her (as do I) and he did well for a while, but he did spend the bulk of the night in his room - like usual. He really just can't handle the talking for very long again. For me though - it was great! It's a very rare thing where I get to have a conversation and food all in one. Our lives really are very quiet.

And I didn't hear anything from the apt complex today. Tomorrow, I hope, although I'm not holding my breath.

So now I am going to sign off and watch the meteor shower. I hope it's visible from our balcony...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat Apr 24, 2010 11:26 am

SATURDAY, APRIL 24, 2010
Day 694 - Apr 23, 2010

We tried to go to the movies again today, but Kevin got too sick about a mile from the apartment so we just turned around and came home. Kevin lay down for a while and then was able to get up and we headed out to Subway because he was 'in dire need of' a sub. It really amazes me that he doesn't look like a sub by now, lol. He is really quite addicted to Subway.

One good thing is that he allowed me to drive around looking for one. We knew there was one about 5 miles in one direction, but we really hadn't driven much in the other direction. So we did drive around for a little while and we finally found one.

I really do need to just get out there and drive, but unfortunately Kevin can't handle being out and about long. I am told we are finally getting an aide to help me out, but from what I understand it's only for 6 hours a week. That's not going to really give me much time to do anything, but it's going to have to do for now.

And to those that let me know about the caregivers bill passing, thank you! Tom asked how I feel about it and the word that came to immediate mind was 'RELIEF'!! I sure hope the President signs that baby and fast! I just want to get this thumb looked at, although I'm sure it's too late to fix it completely. I also can't complain about having an income either. It will be nice not to have to lay awake worrying about the financial future.

And Anita - yes, we knew that a Toy Story 3 was in the making. Kevin can't wait for it to come to the theater. And we were headed to see How To Train Your Dragon today - glad you liked it. Oh - and we always go to do everything at 'off' times. There would be no way during any of the normal busy times. Not for movies, restaurants, or anything else.

And to Barbara Burke - thanks for letting me know about being able to call 911 when the elevator is down. I hope we don't ever need to do it, but at least I have the knowledge if it ever is necessary.

And now I need to end this thing. There is a howling wind out there and there are tornado warnings so I better post quickly just in case...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sun Apr 25, 2010 12:12 pm

SUNDAY, APRIL 25, 2010
Day 695 - Apr 24, 2010

Today was really a great day. Kevin felt well enough to head to Target shopping (I had to return a blender that when I opened it was used and dirty - yuk!) and he did fantastic the whole time. I was very proud of him because he wanted a slushee and I made him get it himself so he wheeled up to the counter, pointed at the picture and paid for it. I really need to get back to cognitive therapy and pushing him to do more, he just hasn't felt well enough for me to really push him lately.

After we got home we had a nice family dinner with Breezy and Chris. They are coming again tomorrow and I am hoping that I can get away for a little bit. It's been a while since I have been apart from Kevin and I need to break away for an hour or two to recharge.

And tonight I have been watching "America's Best Dance Crew" and it just reminded me of when Kevin was really young and he was break dancing in the talent show at his elementary school. I sure wish I had filmed that event. He was so dang adorable and so dang talented. (remember that, Breezy?)

And now I think I will head to bed. Before I forget - Grant - I don't know if we will be in East Brady for Riverfest or not. Kevin will be having surgery I think in June and again in August so I'm just not sure about us traveling in July. We'll see though.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue Apr 27, 2010 9:50 am

TUESDAY, APRIL 27, 2010
Day 697 - Apr 26, 2010

We didn't really do much today. The home health company came out to get us admitted into their system and it looks like they are also going to hire someone Kevin's ageish that has some of the same likes/dislikes. In the interim, they are going to just send someone else out and it appears it will be for about 15 hours a week. This is a good amount for now as Kevin really doesn't feel well enough to go do much. I am going to strive toward getting out for at least half of that time each week too. It's the only way to keep going forward on the separation anxiety thing.

My main goal though would be for this person to take Kevin out and do things, as well as play games and do other things with him at home. Like I've mentioned before - just someone to be his 'friend'. I sure hope this company is better at hiring than the last company, lol.

And I know my posts have been short lately, but there really isn't much to say. Kevin is very limited in the amount of time he can stay out of bed, so our lives are pretty boring right now. We are hoping to make it to the movies tomorrow...wish us luck...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed Apr 28, 2010 9:21 am

TUESDAY, APRIL 27, 2010
Day 698 - Apr 27, 2010

Today we actually made it to the movie - YAY! It was a pretty decent movie and we both really enjoyed it.

That's pretty much it for today though. We really didn't do much else.

This would be my normal post of the day. Sounds pretty boring and easy, huh?

I had a long talk though with one of my friends today - someone that I haven't spoken to in many, many months because there is just no time for me to be on the phone with my friends/family. She told me that although she knows the reality of the situation - I am painting too rosy of a picture and others are not seeing it clearly. I am letting people believe that we have 'boring' days when truthfully, our boring is nothing like your boring. I am letting my friends/family/readers think that we are living some kind of wonderful life when you couldn't be farther from the truth.

I never really thought about it that way. Mainly because, in order for me not to have a nervous breakdown about how horrible our lives really are, I NEED to stay positive. I HAVE to end the day thinking of the half hour or so of good moments we had. Yes, the HALF HOUR or so of good moments.

You see, when I say we had a good day, in truth that just means that for 30 minutes (or whatever short amount of time) of the day Kevin and I were normal - your normal - not ours.

This, my friends, is what I could be writing. What REALLY happened today:

I finally fell into bed at about 5:30am. Kevin just doesn't sleep and although I try to stay up with him, I just couldn't stay awake any longer. And I wish I could just fall asleep immediately - you would think I could, but I never can and many nights I don't sleep at all.

I lay there thinking about my parents and my dad's cancer, about money and how I am going to survive if this bill doesn't go through quickly, about how much I miss my friends and the ability to just jump in the car and go somewhere. I toss and turn trying to find ways to help Kevin get better faster. Or even to get better at all. I cry because I don't want my son to go through what he is going through. I hate that he is in CONSTANT pain - and it never goes away (there are just varying degrees of it). I think of Breezy and how devastating this was for her and how many days she can't bring herself to smile - even with all of the positives in her life right now. I think about how people assume they know what we are going through, but really have no idea. I sometimes am too angry to sleep - not at Kevin - never at Kevin - but at the system and my constant need to fight for everything.

All of this - and it's still technically the night before my day even begins.

So I did probably fall asleep somewhere between 6 and 6:30 and I got my first phone call at 7:13. It was Kevin. He needed his fan turned to speed 1. I zombied it to his room and took care of it and crawled back into bed. I got more phone calls at 8:26, 9:15, 9:42 and 10:28 - none of these Kevin. This was a good day as sometimes it rings non-stop.

I did just stay up with the 10:28 call and started the day. Kevin was up - I don't know if he ever went to sleep or not - probably not. Since he heard me - the MOMs began. To throw some hilarity into this situation - here is what Kevin is like:



Sadly, it really is a lot like this.

So we were going to go to the movie and I got Kevin up and moving. He went into his closet to pick his clothes and I jumped into the shower. Within 4 minutes he was screaming in pain so bad that I could hear him over my running water. So I jumped out to get him some pain pills and then I jumped back in, finished conditioning my hair and got out and dressed.

At this point, I didn't figure we were going to the movie. We needed to leave in 30 minutes to get there comfortably and Kevin takes A LONG TIME to go anywhere. The movie theater is 15 minutes away and we need to leave 60 minutes before the movie starts.

So he lay in the dark in his room and after 30 minutes the pills still didn't help his pain at which time I gave him some Tylenol to help the oxy's along. It was already time to leave. About 20 minutes later, Kev managed to get up and get ready to go. It still took him another 20 minutes to dress and brush his teeth and by the time we made it to the car the movie was going to start in 20 minutes. He still wanted to try to go because it had been 3 days since he left the house and he was going stir crazy, so we ventured out.

I only had to pull over 1 time due to his nausea and since we have these tablets that dissolve under his tongue to combat that, we popped one in and away we went. He was still sick, but we made it without any vomit. Huge sigh of relief.

I dropped him off at the curb and went to park. He was still only halfway to the door by the time I was done and I ran past him to get the tickets. I also went to the counter to get his ice cream and drink. By this time he made it in and I pointed him toward theater 17. As I juggled everything, we finally managed to get to the right theater and it only took about 6 minutes or so to walk there - roughly 150 steps. Do I complain? NO. I just patiently walk beside him. I am so proud that my son CAN walk to the theater by himself. A miracle - and we all know it!

(he moves much slower without the plate)

Once we got in, we have to go all the way to the top and we have to sit at the right of the theater. If we aren't at the top and to the right, Kevin can't see the whole screen. Losing half of his vision has created a whole bunch of situations that you wouldn't normally think about.

(and thank goodness there are always so many previews! by the time we got situated the movie was just starting!)

After the movie, we got back in the car. We took more pain pills and headed to Walmart. Kevin stayed in the car because he was too sick to get out, but he demanded ice cream - our whole reason to be at WM. He wanted more at the theater, but we just can't afford it at those prices.

So we did get home without mishap and Kevin immediately went to his room. The MOMs are still continuing and will until I drop into bed. We got supper and Kevin actually was able to stay at the table long enough to eat it. He usually can't sit that long and he ends up eating an hour later in his bed (after his head has stopped hurting so much). I should also mention that I can't cook anything that requires me to stand at the stove. Kevin needs me constantly and I would burn it all if I had to stir anything all the time.

So I guess I just wanted everyone to realize that although I say our day was great and/or boring - it's in our way, not yours. I grab hold of small bits of the day and try to focus on them so that I can get out of bed the next day. Those moments are something precious to remember. It's either that or I can repeatedly think of all the MOMs and the suppositories and the crying and need for so many medications and the screaming in pain and the ball and chain keeping us in the house and Kevin's inability to talk and really - I could go on an on.

But let's not, ok? Let's just say that we went to the movies today and it was a great day. We had ice cream and popcorn and sodas and for ninety whole minutes we were mostly able to forget what happened...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Werner » Wed Apr 28, 2010 9:23 pm

What a life - what dedication and commitment to her son - and how long will it cotinue? Will it ever get better, or back to normal?

I don't know how many people have the strength as denonstrated by Lesley.
Werner Isler

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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Apr 29, 2010 9:57 am

THURSDAY, APRIL 29, 2010
Day 699 - Apr 28, 2010

Thanks to everyone for their support and kind words. I can't even begin to explain how the comments keep me going sometimes. When I hit a low, I just hear your words and it prods me into 'wiping the sweat and driving on' (in the words of a member of The Herd).

So an aide came today. Now you just can't imagine how excited Kevin was when he showed up with a Steelers tattoo on his arm and a Steelers bag with his tricks of the trade inside. You should have seen Kevin's grin, lol.

And they did hit it off pretty well. Kevin actually got up and gave him a tour of the apartment and then they watched some TV together (Spaceballs, I think). They discussed music and it was nice to see Kevin up and about for a while. I was really happy to see the guy not minding that Kevin needed quiet and to lay down for a while too.

After he left, Kevin took a nap for an hour or so and we decided to go to the mall. I am struggling to find things to do with him that are really close by. Tomorrow, I plan to scope the area out once the aide gets here. I am told he will be here 25 hours a week and that is even better than I thought. I DO plan to get out and do things at least twice a week - even if it is only an hour. It is one of my goals to get Kevin as independent as I possibly can. I am hoping just having a 30 year old male around may help as well, but I am going to truly leave the apt as much as I think Kevin can handle (or maybe even nap? Egads!).

And now I am seriously going to bed. I can only hope Kevin will allow me to get some sleep. My eyeballs hurt and I have this thumping headache tonight, which is very unusual for me. I can only assume it's because I am working my butt off trying to get an audit done for both the court system and the VA. I have been entering transactions into Quicken for days now and I am nowhere near done. Maybe having the aide here will help me complete it. Truly - I just need some uninterrupted time to get it done...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Neytiri » Thu Apr 29, 2010 10:01 am

Werner wrote:What a life - what dedication and commitment to her son - and how long will it cotinue? Will it ever get better, or back to normal?

I don't know how many people have the strength as denonstrated by Lesley.
+1.

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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Apr 30, 2010 9:46 am

Thanks Werner and Neytiri, I hate to say it but I doubt that life will get significantly better for Kevin, when they put the plate back in it will improve but only to a degree, he is strong willed and determined to do his best given the seriousness of his injuries but he'll never get anything close to a real life, the changes and progress in battlefield medical abilities are what saved his life, also, I have never come across anybody like Leslie, her efforts with Kevin are almost superhuman and i'm glad that she opened up about the reality of the situation because it is truly incredible what she goes thru on a daily basis...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Apr 30, 2010 9:47 am

FRIDAY, APRIL 30, 2010
Day 700 - Apr 29, 2010

I was on the phone most of the day with the VA and various case managers. It turns out that we are only getting 15 hours of the aide a week like I had originally posted. I guess I have 30 6-hour days of respite care available in case of an emergency (or if I want to go on vacation or for whatever reason) and someone assumed that I wanted to use 2 days a week of that, giving me 25 hours. I'm not really sure who made that assumption, but I sure don't want to use emergency days up. With my dad being sick, it would be irresponsible of me.

We also have an 'emergency' of sorts going on right now. Breezy took her car to have her breaks fixed because she was tapping the floor every time she needed to use them. It turns out that - because the car sat in PA for a year or so (without being run at all) - the whole underside is nothing but rust. The mechanic she took it to said he wouldn't want his sister getting in it so I am flying to FL tomorrow to bring the other car to TX. It is just not in our budget to buy anything right now and besides that - she hasn't worked long enough (post Kevin's injury) to get a loan. So I leave in the morning, spend one evening with my parents and then drive 17 hours back to Texas. I'm not afraid of driving by myself, but I do wish I had someone to ride with me. I know how tired I am and that is the only thing that worries me.

But it is what it is. And this will enable me to get a bunch of things that we need from the house.

So Joseph, the aide, will come and sit with Kevin tomorrow until Breezy can get here after work. She will stay with Kevin the rest of the weekend. Joseph did come today again, but Kevin was pretty mad all day. He wants to go home to FL and assures me that he can handle the car ride, but we all know he can't. Besides that, I don't think he can even handle the flight. He can barely sit up in bed without screaming in pain. Can you imagine take off and landings? No way.

And now I really need to get to bed. I will say that I slept like a rock last night. It was just so wonderful! I sure hope I can do it again tonight...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat May 01, 2010 12:31 pm

SATURDAY, MAY 1, 2010
Day 701 - Apr 30, 2010

I made it safe and sound to my mom and dad's house (our house too) and got the car all loaded and packed to leave in the morning. It is so nice being with my parents, but wow - has my dad lost a lot of weight. I worry so...and really hate being away...

So they are hoping to come visit us soon and I hope they can. I'm not sure when dad starts his next round of chemo so I guess we need to wait and see about that.

And after reading last night's post again - did anyone catch that I spelled brakes wrong? Geez...I must have been more tired than I thought, lol.

Ok, I am signing off early and getting to bed. I have a long couple days ahead of me...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sun May 02, 2010 12:55 pm

SUNDAY, MAY 2, 2010
Day 702 - May 1, 2010

I am pretty much going to skip writing tonight. I drove 13 hours today - made it all the way to Lake Charles, Louisiana and I have about 5 more hours to go tomorrow. I am tired though.

Kevin is doing remarkably well. He only called me a couple of times today and I am really proud of him. He has made such great improvements on the separation thing. I am thinking that maybe Breezy can watch Kevin one weekend every 2-3 months? I have 14 more free hotel nights (thanks to the last time we were in Texas and stayed in that hotel for two months) and I would love to see Louisiana - it's always been a dream vacation to me - and it's really not far from SA.

So anyway, I am going to bed. I am just beat!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Mon May 03, 2010 9:06 am

MONDAY, MAY 3, 2010
Day 703 - May 2, 2010

I made it home safe and sound. No speeding tickets either - which is pretty good for this lead foot.

So I got home and had dinner with the kids, we unloaded the car and then Kevin and I played Skipbo for quite some time. Now I told him that I just have to get some sleep and we'll see what happens. Breezy said he didn't call her on the phone one time last night. She was so scared when she woke up and realized it that she ran to his room to check on him. He was just snoring away. It sure would be wonderful if it happened again tonight - I am still just so tired.

And on that note, I am going to bail on you guys again and go to bed.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue May 04, 2010 9:50 am

TUESDAY, MAY 4, 2010
Day 704 - May 3, 2010

Kevin barely got out of bed today. He did take a shower and that's about it.

I am just going to answer a few questions/comments and then try to get to bed. I can hear Kevin sleeping so I want to get some zzzzz's myself.

GrannieEv - I signed up for that survey weeks ago and have already been contacted about possibly taking part in one of the discussion groups. They are dated later this month so we will see if I get to participate. Thanks for letting me know about it!

Anita and everyone else - I know that you all tell me that I need to take care of myself, but it's really just not that easy. I made a goal to get my sense of self back this year and here it is - May 4 (Happy Birthday, MOE!!! - it's the first BD I missed - I'll try make it up to you though!)...Anyway...here it is May 4 and I haven't done one thing (that I can recall anyway). As for my blood pressure and/or seeing a doctor - not going to happen unless this bill goes through and I get medical coverage. We all know that the doctor's bill never stops at just seeing the doctor - there's always blood tests and work ups and yada yada. Totally not in my budget.

Janna - after Sept sounds perfect for a visit. Once Kevin has the plate back in he should be able to handle company a little bit easier. Good luck with the move!

Bryan Ott - 270 days after the President signs it? Holy crap! I am so not political and can't even begin to understand why it would take that long to take action. That's 9 months away!! Does it just take this long to figure out how to make the bill work? Or is that going to just add even more time before we are able to buy groceries and pay our bills? Also, you mentioned "You will get what the CNA's get for the hours the VA determines you provide Kevin with care". Hmmm...a little humor here - I know our CNA got $10 an hour. Since both you/Chris and I work 24 hours a day, 7 days a week, what do you think the odds are that we really get paid $7200 a month? Bwaahaaha! I think I can guarantee that's not happening, lol! (and say 'hi' to Chris and JT)

Cathy M - I don't know about our aide doing any type of 'therapy' work, but I did call our case manager at the VA here in SA today and told her that there really is no way that Kevin is going to be able to 'go' to any therapy. We are really going to have to have therapists come into the home and even then I'm not really sure he can handle it. He has just slid so far backward in this regard...

And now I am heading to bed. He has been sleeping the whole time I have been typing away so maybe it will be a good night...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed May 05, 2010 9:28 am

WEDNESDAY, MAY 5, 2010
Day 705 - May 4, 2010

We had a much better day today. Kevin got up and around and we went to this new grocery store that we just found. It was huge and had all kinds of things that I have never seen before. We were probably there about an hour and a half and Kevin did pretty well. He (of course) stayed in the electronics department and I was gaga in the pasta aisle. Has anybody ever heard of chocolate pasta? Yep! I couldn't believe it. I bought some to make dessert over the weekend so I'll let you know how it tastes.

He was hurting when we got home so he did lay down for a bit, but then he got back up and actually managed to sit at the table and play a game of Skipbo with Breezy and I. He also ate dinner with us, which was really amazing.

After dinner we all called Moe and sang Happy Birthday and then Kevin just went to his room, Breezy did the dishes and I actually talked to Moe for a long while.

All in all, it was a pretty good day. I always like it when Kevin gets up and does thing with me/us. And he is really hooked on Skipbo right now - which is great. Anything to make him think!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri May 07, 2010 9:46 am

FRIDAY, MAY 7, 2010
Day 707 - May 6, 2010

Kevin has had a couple of rough days. Yesterday we went out for a bit and Kevin was hurting so badly that I had to pull over numerous times and just sit there while he controlled the pain - or at least tried to. It's hard because we never know when it's going to hit. Sometimes we can be out and about for an hour or two and sometimes we can't even make it five minutes down the road.

Today I managed to get Kevin out of his room to eat dinner with Breezy and I. That was about it though. We tried to play Skipbo, but Kevin only made it about 7 minutes or so and then he had to get back to bed.

I just can't wait to get that plate put back in so we can resume our lives. It's just so hard watching him be sick and in pain all the time.

And that's really about it. It's hard sometimes to come up with things to say because we don't go anywhere or do anything. This is why the posts have been on the short side - which unfortunately, is exactly how it's going to be again tonight.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Mon May 10, 2010 9:20 am

MONDAY, MAY 10, 2010
Day 710 - May 9, 2010

I hope everyone had a great Mother's Day! Ours was nice. Kevin didn't make it to the table for dinner, but Breezy, Chris, Josh and I ate and it turned out well.

And my kids got me a certificate for a hot stone massage at a spa down the road a bit. I am really looking forward to that!!

But tonight...tonight Kevin is very sad. He found some photos on his Zune from before he left for Basic Training. Photos where he was whole. Handsome. Normal.

He has mostly been crying for the last half hour or so. It's hard because there really are no words to ease his pain. Let's be honest - he has absolutely no quality of life. He is in constant pain. He is disfigured permanently. He has no friends. And he can no longer think like he used to be able to.

I'd say that pretty much sucks - no matter how much we all know that it's a miracle that he is alive.


So I have to let him cry it out of his system. I just keep going in and checking on him every 3 or 4 minutes or so and I can only hope that tomorrow he wakes up and doesn't focus on the losses. We all know what a slippery slope the road to depression is so I will have to keep my eye out once again.

If everyone can just keep their fingers crossed...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue May 11, 2010 9:25 am

TUESDAY, MAY 11, 2010
Day 711 - May 10, 2010

Kevin did have a better day today. Cathy M - you asked if I thought Kevin forgot seeing the photos to get through it or if he just pushes bad stuff from his mind. I truly have no idea, no way of knowing. It's my guess that he does a little of both, but there is probably more of the forgetting.

I know that last night he made me take his Zune out of his room so I lay it on the couch next to me (hence pushing the thoughts from his mind). Today he came out and actually sat in the living room for a bit and questioned why his Zune was there. All I had to do was look at him though and he remembered what happened. So I guess he is forgetting for an instant, but he pretty much remembers pretty quickly - with a look or some other trigger to make him think for a bit. (and let's be honest - don't we all forget stuff throughout the day?)

This is when it becomes another aspect of my job though and that's to keep him occupied so he doesn't focus on those crappy thoughts. Today we played Skipbo twice with Joseph and then 2 more times this evening. I also went and took a nap (!!!) this afternoon while Joseph was here and I could hear the two of them laughing just as I was drifting off. What a truly wonderful sound!

And then - Kevin called my nephew, Anthony, today. Kevin pretty much never initiates phone calls. I have no idea what prompted it today, but it sure made me smile. I just walked away and left them talk. Truthfully, I didn't even know who he called, but he told me later when I asked. (he puts his arm around an imaginary person next to him - like he would a good friend - and I know it's either Ronnie or Anthony)

Really, it was a good day for the most part. He still couldn't handle eating dinner at the table, but after playing cards, I never thought he'd be able to. It's alright though - I have gotten quite used to eating alone and I would rather do that than have him be in pain.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed May 12, 2010 10:09 am

WEDNESDAY, MAY 12, 2010
Day 712 - May 11, 2010

I realized tonight that it had been 4 days since Kevin had gotten out of the house so I loaded him up and we went to Sonic for ice cream after dinner (maybe 3 miles away). I medicated him pretty heavily before we left so we did make it with no problems and we were able to sit there and eat for about 15 minutes before Kevin's head started hurting, meaning we needed to get back home.

After we were home for a while I needed to shave him so I lathered him all up and took my first swipe with the razor and didn't he grab his neck and start screaming! I was so panicked thinking I cut him and I was screaming 'let me see! let me see!' and I was trying to move his hand away from his neck and he flippin' burst out laughing. The little excrement. I was scared to death, I tell you! I think he's been watching too much Family Guy. He has such a twisted sense of humor.

And I have been hitting the audit pretty hard because I need to have it filed within the next 11 days. I am running out of time, but it's just not easy because Kevin always requires my attention. I am close to being done though, so maybe tomorrow...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu May 13, 2010 8:47 am

THURSDAY, MAY 13, 2010
Day 713 - May 12, 2010

Today I finally broke down and allowed Kevin to purchase a new cell phone. He has wanted one for months and I just kept stalling because...really...how much does he use it, right? (other than to call me - that's constant)

When I got his phone over a year ago, I did only get the freebie one because I wasn't sure if he would even know how to use it. I was wrong on that one and I thought to myself today - why not? Sometimes when he has to figure something out, it's like more neurons finding new pathways, so he got himself one of those backflip phones and he has been running around taking pictures and videos all night. He is just so excited. Typical guy with a new toy, eh? LOL.

And today we actually left the house twice! A first since he has been out of the hospital.

I had to go to the orthodontist early this afternoon and I took Kevin with me. He did super well and everyone was so excited to meet him. I had first seen this ortho back when Kevin was in a coma. They have followed his progress so I was really glad they did get to meet him.

And then tonight he kept asking to go to the phone store so I caved. So far he has figured it all out on his own so I'm glad I took him. And to me - every little thing that makes him act like a normal 21 year old is a good thing!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri May 14, 2010 7:42 pm

FRIDAY, MAY 14, 2010
Day 714 - May 13, 2010

Today was a really good day. We had an appt at a small VA clinic to join up with a primary care doctor. I was very impressed with the way they asked me first if they should speak to me or to Kevin. I asked them to speak to him to try to see how he answered the questions. He did fantastic! He seems to understand the pain scale now and even told the doc that he had 'sharp' pains in his head as opposed to dull, throbbing, etc. He has never been able to describe his pain before so this is wonderfully new. She probably asked about 30 or more questions and the only one he didn't understand was 'does your chest hurt?'

I was also very impressed with him actually being honest and 'saying' he doesn't understand. It's the norm where he just goes along with what is said rather than show that he doesn't comprehend something.

So anyway, he really did well. He played his Zune for a while when I did have to go over all of his meds and he handled the whole 2 hours or so that we were there very well.

Even better, when we left he still felt well enough to want to eat a late lunch out. (he did need meds though). So we headed to a Red Robin - we had never eaten there before - and he did great for a while, but about the time the food got there he was really starting to hurt. I wasn't surprised as it had been nearly 4 hours that he had been out of bed so we just packed it all up and went home to eat.

All in all he did fantastic!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat May 15, 2010 12:50 pm

SATURDAY, MAY 15, 2010
Day 715 - May 14, 2010

We woke up today to a whole bunch of flooding. The whole back area of the apartment complex was under water so we opted to not go anywhere at all today. I knew a lot of the roads were probably closed too and I sure didn't want to get somewhere and maybe not be able to get back home.

It was a pretty good day though. I got my floors scrubbed and Kevin and I worked literally for hours on a puzzle I purchased the other day.

His new mattress was also delivered tonight (and roads were closed - that poor delivery guy) and although it was supposed to be longer, it's the same length. I guess I have to call the VA on Monday and get the proper bed ordered. Poor Kevin is so tall that his feet are against the foot board. It doesn't help that he sleeps low in the bed, but it's where his body is most comfortable. And I can't say much - in the beginning he used to have his feet hanging a foot over the end of the bed. You wouldn't believe how many hundreds of times I would help the nurses pull his body back up the bed to the top of the mattress. He would always scoot back down though.

And now I am heading to bed. It's been raining again for the last couple of hours so we may not be going anywhere again tomorrow. I hope we can - I really need a few groceries. I have been trying to push the fresh veggies and I am all out of them. Kevin is drinking a lot of milk again too - just like the old days - nearly a gallon a day. No wonder he weighs 192.5 now... (which, btw, we did figure out that his last weight gain was due to a new medication. He gained that last 20 pounds really fast and has gained nothing since.)
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Mon May 17, 2010 9:58 am

MONDAY, MAY 17, 2010
Day 717 - May 16, 2010

Well...Kevin didn't play along last night. As soon as I finished posting, he decided to get up and wanted to finish the puzzle. So that's what we did.

I am so happy to say that I finished the audit though! It would have been nice if I had had all the transactions from the last two years entered into Quicken - but I didn't have any of that done. That's what has taken so very long - just getting it all in there so that I could run reports.

But alas...it's done! I am so going to try to keep up with entering the data, but it's just not easy to do with this lifestyle.

Personally I am hoping to have him declared competent by the end of the year. He completely understands money and he knows what he wants to buy and what he doesn't. He also knows how much money he gets, how much he has in the bank and what his bills run. He will put things back if he thinks they are too expensive and he will call you on it if you don't give him back the right amount of change. I am proud to say that he always counts what a clerk gives him before he puts it in his wallet too. How many of us do that? LOL!

All along I have made it a point to keep him aware of his money. I have never spent anything without discussing it with him first. In my eyes - this is his money (even though the VA says it's not), so he should make the decisions.

And moving on - today we did nothing. I really am feeling crappy lately (I am assuming it's allergies - headache, coughing, congestion, etc) so I took a shower and put PJ's back on. Kevin was upset because apparently he wanted to go somewhere, but it wasn't happening. I am whooped.

And I wanted to save my energy because tomorrow he has doctor appts. One is the burn plastic surgeon and other is pain management. We should find out when his surgery is in June. I just hope those skin expanders don't hurt too much. Or look too bad. I am also worried about the placement. They are talking about putting them in the back of his head and I don't see how he is going to sleep if that's the case. I guess we'll find out more tomorrow...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue May 18, 2010 2:18 pm

TUESDAY, MAY 18, 2010
Day 718 - May 17, 2010

Kevin did fantastic today. We had to wait so long to see the plastic surgeon and he really did well with the wait. Remember when he wouldn't?

So we did finally see him and it turns out that the neurosurgeon needed to be in on the conversation. They are going to let me know as soon as they figure out when the surgery will be - June or July.

They also aren't sure exactly where they are going to place the expander. They typically put it where the skin is needed, but with nothing to protect the brain they just can't do that. So they are discussing on top of his head. I am good with that. It will still allow him to sleep and he can still cover it with a hat when we go out in public.

They also plan to fix his left eye because it had too much skin put in place during the last release. They are discussing the right eye too as it's starting to pull down a little bit. He also has a lump on his right ear that is going to be removed and they are going to 'cut off' some of the deep scar tissue along his neck on both sides. Oh, and botox too in his right arm (although occupational therapy needs to be in place first).

I am not sure if they plan to do all of that at once or if some of it will wait until the following surgery. I guess we'll find out soon enough.

So all in all we were out and about for roughly 6 hours or so. We came home and Kevin rested for a few hours and then we needed to go get milk so we headed down the road again. Unfortunately, there was a wicked storm passing through and I have to say I have never seen continuous lightning before - spooky - so we just came back home without getting the milk.

And now I am really heading to bed so I will get to the guardianship questions tomorrow.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed May 19, 2010 9:17 am

WEDNESDAY, MAY 19, 2010
Day 719 - May 18, 2010

I ducked out for a little bit today while Joseph was here. I didn't have anything to do, so I went to the mall and just sat in the food court and talked to Moe on the phone. It's really a sad thing when there is nothing to do and no one to do it with.

But I got out, right? That's a good thing.

Other than that, we didn't do much of anything today. A couple games of cards and that's about it.

So I guess I'll answer some questions:

Janna - thanks for letting me know about the expanders. It helped that Grey's Anatomy had it on last week too, lol. Seriously though - I'm glad you mentioned how unattractive they are - I told Kevin it will just look like it did back in the beginning. He didn't seem to care, but that may change when his head actually starts growing.

And I'm so sorry - you probably told me at one time, but why did your son, Zach, have them?

(I should interject that I have retained very little from the beginning of this endeavor. If any of you told me things of your loved ones - more than likely I won't remember. Sorry.)

GrannieEv - you asked me whom the money belongs to - the VA field rep told me that the VA benefits are given to me to take care of Kevin. (although it's not my money and not one penny can be spent for my needs.) I suppose technically it is Kevin's money - he is just not allowed to touch it personally. He does get an allowance from the benefits, but even his allowance is audited as to how it's spent.

At this point, because Kevin has been declared incompetent, we have to ask for permission to buy anything major. Even to rent this apartment I had to have written permission. And they are strict about it too. Back in January I was having the fence put in and I went $4 over the limit without calling for permission first. I was at Lowe's, didn't know it would be that much, it was Jan 1 - a holiday, the installer was coming in the morning, so I just wrote the check. When I called a few days later to let them know I got screamed at and told if I did it again I would be stripped of my fiduciary duties.

Now I do understand that they need to protect the veterans from unscrupulous parents/spouses/siblings etc, but it just makes it so difficult for those of us that don't steal their kids' money.

What makes it even harder is that Kevin is far different than when we got him declared incompetent. Now he knows when he wants something and it's hard to tell him 'sorry - need permission first'. And let me tell you - he was really mad a while ago when we were picking up dinner and I only ordered for him. He asked why I didn't get anything and I told him I couldn't afford it and he pointed to himself as if to say he would buy it and I said 'no buddy, you can't buy my food'. He was furious. I have almost always paid for our meals before, but now that he's discharged from the Army he needs to start carrying himself financially. It's just hard for me - I am the type of parent that always takes care of the bill when we go out for dinner - it's just what moms do.

And I should say that I never used to tell him this stuff, I always kept the crap from him, but he is able to understand now and he should know what's going on. So he is more informed now about all matters. I am determined to get him as close to normal as I possibly can and this is a big step in that direction.

Cathy M - you asked about the pros and cons of declaring Kevin competent - we had the hearing back when Kevin was just emerging from his coma. It was necessary at that point for me to be able to make medical decisions concerning his treatments. He also would have never been able to protect himself financially or deal with any of the decisions that needed to be made on many subjects while he was hospitalized. This enabled me to fight all the battles that were necessary and make all of the decisions to protect him from anyone that he needed protection from. I was able to then take care of his bills and do his taxes, purchase the van for him and go round and round with the Army over his pay being incorrect every single month.

Now though? Now he makes most decisions himself. I discuss everything with him and treat him just like I would Breezy if I felt she wasn't making the right decision. There's guidance and there's control. I am striving for guidance.

I do think that Kevin could probably be declared competent right now, but I want to wait until the plate is put back in. He will have to go through 4 hours of psych testing for the courts and he won't be able to handle it right now. He would be in too much pain and I don't want him to go through that. A little longer won't hurt anyway.

Ok, I have rambled enough tonight so I am going to answer the rest of the questions tomorrow night.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu May 20, 2010 9:55 am

THURSDAY, MAY 20, 2010
Day 720 - May 19, 2010

I am going to skip writing tonight. I didn't sleep one wink last night - I just tossed and turned all night, finally giving up at about 8am or so. Tonight, I am just so exhausted.

I do want to quickly post a lovely poem that Patricia wrote to help us remember our home state of Pennsylvania (Thanks, Patricia!):

Leslie ~

For you and Kevin and Breezy...to remember the days of Pennsylvania...I wrote this, sitting at my window...thought something nice to read would bring a smile...

Sunday writes itself upon our memory.

The sky changes blue as it is a background for foliage. Dark green sets it blazing brilliant blue...near the horizon a wisp of blue gray....around clouds the soft blue of faded jeans....

Everyone is cutting grass and planting flowers and since it has rained so much, the air is filled with pungent soil, grass clippings, compost, blossoms....the woman across from me began early this morning with her plantings and now her yard is a coloring book unfolded...

Sounds of conversation follow the breeze indoors, drifts around each room, and settles like dust on counters and bedspreads...

When we were children it was a day for baseball, street kick ball, walks to the parks, sitting on stoops and backyard porches with friends, our feet up on banisters...Popsicle melted down limbs and we never minded the sticky sweetness...just laughed...remember the days when we laughed because we loved the feel of it?

Windows are open for the house to air....sweeping remnants of winter and cold away...

I just cleaned the kitchen. Clorox, Murphy's Oil Soap, dish liquid...now it smells like my home on Adams street. How our mother's habits stay with us. Maybe that is why they taught us as they did. So when we clean, and the smell of years ago is recreated, we have a moment with them.

The day's sun is drifting in time beyond the tree line and shadows spread like so many palms and fingers...

Gentle.

A simple word that releases its sigh against the coming of the week...

Enjoy.

With love.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri May 21, 2010 9:07 am

FRIDAY, MAY 21, 2010
Day 721 - May 20, 2010

Today we just stayed home. I cooked a big dinner and Breezy came over and ate with us. Kevin even managed to stay at the table the whole time too!

Our afternoon/evening was spent with a VA Fiduciary field rep that came to our house to go over Kevin's budget. She was a very nice woman and we had a long discussion about competency. I feel good about the bulk of it, but when she asked if he watched any news to stay informed on current events I had to say "no". Truthfully, he never watched the news before either. Gotta think about this one.

I drew the line at the photo though. She was told to take a picture of Kevin and I don't know why the financial people would need a photo of him so I did not allow it. I didn't allow it in FL either. He's not some kind of freak show and I can see absolutely no reason why they would need one. Doctors? Sure. Pencil pushers? No way.

Maybe I'm way off base here, but I just can't see it...

And Kevin came over and crawled in my bed at 5am this morning. He has not been comfortable in his bed since he got the new mattress. I called the VA yesterday to see if we could get the old one back and I can only hope they do it quickly. He really has barely slept in the last week. This new mattress is very hard and he always has indentations on his back from it. Keep your fingers crossed that it's quick, please.

And Kevin just called me in his room to listen to his Zune. He has been listening to a little bit of classical music lately and he wanted me to sit and listen with him. Sometimes he will listen to it in the car too - so much better than that horrid screamo stuff, lol.

And now I want to try to finish a movie I started watching early this afternoon. Breezy and I did watch Grey's though tonight - did anyone see it? Geesh. My hurt heart.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed May 26, 2010 8:18 am

WEDNESDAY, MAY 26, 2010
Day 726 - May 25, 2010

Yay! We made it to see Shrek today! Kev did pretty well throughout the whole movie, but by the time it was over he was in quite a bit of pain. Unfortunately it didn't end all night long - no matter how much medication he took. Sometimes I wonder if it's worth getting him out of the house, but I hate the thought of him being completely home-bound.

And I got a refill of Kevin's meds in the mail today and the wrong ones were sent. It looks like I get to head over to the VA clinic tomorrow and try to get the correct ones. I hope it's not a problem. We are just about out so I MUST go tomorrow - there isn't enough to make it through the next day. Luckily Joseph will be here so I won't have to drag Kevin out.

And that's pretty much it for today. Not a whole lot going on in life right now...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu May 27, 2010 9:29 am

THURSDAY, MAY 27, 2010
Day 727 - May 26, 2010

We had a pretty decent day. I went out and about while Joseph was here, mostly just driving around.

The medication situation was taken care of so all is well on that front.

And Breezy came over for dinner tonight so we cooked cheeseburgers and hot dogs and just had a simple meal.

I called about getting that new mattress because it hasn't happened yet and tonight I noticed that Kevin is actually getting some skin breakdown on his back. In all this time, we have never had that. I sure hope they hurry with this exchange. I am just not liking this.

I also talked to the doctor today and we decided to take the one pain medication we were reducing back up to what Kevin was taking a couple of weeks ago. He's back to not sleeping at all and I have been having to give him more and more pain pills. For a while there he was sleeping pretty decently and looking over the pain pill log I can see that I have had to increase his dosage about 2-4 times more a day lately. I can't say for sure if this is the problem, but I guess we'll see soon.

And that's about it for today, so I guess I'll head to bed.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri May 28, 2010 10:11 am

FRIDAY, MAY 28, 2010
Day 728 - May 27, 2010

I have some rather exciting news to share with everyone. Y'all might want to sit down though...

It appears that...

I am going to be a grandmother!!!

(severe heart palpitations)

Yes. My darling daughter and her boyfriend, Chris, are expecting a tiny little baby on January 16, 2011.

I took a respite care day today and went to see the OB/GYN with Brianna as Chris is still active duty and couldn't be with her. I was impressed with the doctor and both her knowledge and her demeanor. And here is a pic of the ultrasound:

The baby is only about the size of a peanut, literally, but we were able to see the heartbeat, which was wicked cool.

So I admit to being shocked. And a little sad. I know that Breezy is old enough (she is nearly 26) and can handle it all, but I feel sad that I can't be there for her like I would like to be. Normally a first grandchild would be spoiled by the grandma, but my situation isn't going to allow that. It's not like I am going to have money to buy things for the little one and I sure don't have the lifestyle that is conducive to babysitting. Kevin is still way too needy to allow me time to keep the baby at all and he sure wouldn't be able to handle any crying. That part right there makes me so sad.

But, of course, I am happy for her too. Breezy is excited (now that the shock has worn off) and she and Chris are picking names and making plans. Chris will be discharging from active duty in about 3 weeks, but will be reserves for the next 3 years.

Kevin took the news really well. When we first told him he just looked really hard at Breezy for about 30 seconds and then he burst out laughing. He thought she was joking. I had to step in and explain that it wasn't a joke and he again looked deep into her eyes for almost another minute and then said 'ok', he smiled and then he just shrugged. Hopefully the plate is back in his head with no problems before the baby is born and maybe he will get back to loving babies and children. He's going to make a good uncle if we can get back to that place.

So now Miss Brianna just needs to start feeling her own symptoms. Even before I knew she was pregnant I was peeing all the stinkin' time, I have been way more emotional lately and certain female parts of mine are just killing me! I swear - if I feel her labor pains I am going to just kick her butt all over the country!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sun May 30, 2010 2:33 pm

SUNDAY, MAY 30, 2010
Day 730 - May 29, 2010

We busted out of the house today. I had a bit of cabin fever so I asked Kevin if we could go back to the Japanese Tea Garden for some more photos. He was all for it so we called Breezy and Chris and we all jumped in our cars and hooked up there.

Kevin wouldn't stick around for too many photos - he was just too busy wandering around - but I managed to get quite a few of Breezy and Chris and just a couple of Kevin.
Here is a link to the photos...

http://www.lesliekamm.blogspot.com/
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed Jun 02, 2010 10:11 am

WEDNESDAY, JUNE 2, 2010
Day 733 - Jun 1, 2010

I can hear Kevin in his room practicing his alphabet song. I have been really working with him on more words and him being able to sing his ABC's. He is really doing fantastic - he is up to the letter G and he says everything so clearly so far.

He is also able to say 'turn off the lights' now, but he still struggles getting the sentence out when he needs to say it. Most of the time I have to make the "t" sound as my finger is on the light switch. This will prompt him to say it. He often needs a little nudge in the right direction.

I do think that maybe 5 years or so down the road Kevin will be able to have some amount of conversation, but I think he will always have to think about how to say what he wants to say. I believe that at times the wrong sentence may come out of his mouth as well, but really...who cares, right? If he could just communicate with his friends and those around him that would be so wonderful.

I am excited too in that a speech pathologist is coming to the house on Thursday to do an evaluation on Kevin. She's not sure she will be able to continue to come, but she can at least help me to best know how to train him. So far my teaching has been by trial and error and I look forward to some guidance.

And that really sums up this post. It's been a bit of a rough few days, but it's time to wipe the sweat and drive on, right?

Right!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Jun 04, 2010 10:24 am

FRIDAY, JUNE 4, 2010
Day 735 - Jun 3, 2010

Well, the speech pathologist came today and it was a pretty decent session. Kevin made it about 1 1/2 hours before he went back to bed.

He did exceptionally well with all of the visual stuff. He remember patterns easily, when showed a picture he could either say the word or tell you how many letters were in the word, he seemed to read quite a bit and he was able to draw lines from shape to shape, small to large on request.

Where he struggled was with verbal therapy. Today showed me that Kevin really doesn't either understand as much as I thought or he just can't retain what he just heard completely.

For example he was read a story with maybe 10 sentences. When asked questions after the reading was done, he couldn't really answer correctly.

And I really don't understand this, but when Kevin was asked what his name was he said "Kevin". But when she asked if his name was Brown he said yes and when she asked if his name was Smith he also said yes. That stumped me completely because he knows his name is Kevin - he will tell you his name is Kevin - so how could he not know his name wasn't Smith or Brown?

I was kinda sad after she left because he really had me fooled - again - and I just want him to be better so badly. I know...I know...there's still time for him to recover, it's just I really did think he understood almost everything I said. He almost always answers appropriately - I really don't understand how he does it.

But anyway (gotta stop blubbering so I am moving on), one cool thing was that she read directions for Kevin to draw a clock and put the hands to 10 mins past 11. He wrote all the numbers correctly and even put the hands in the right place. It was impressive to me that he could do that, but it was even more impressive that she read all of the directions at the same time and he was able to do it all without needing anything repeated. (so he remembered this, but not the story? maybe cause it was only 2 sentences?)

Anyway, if you remember from many months ago while we were in FL, we were working on him following multiple directions given at one time - like sending him into Walmart for bananas and bread, but you may also remember that back then he only ever remembered one item.

I am going to take this as an improvement. After today, I guess I need to focus on the improvements we do have and I need to be realistic in what I am seeing and not what I am wanting to see.

Although personally, I like the world where I see what I want to see so much better...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat Jun 05, 2010 12:58 pm

SATURDAY, JUNE 5, 2010
Day 736 - Jun 4, 2010

Kevin has been very angry for about the last week or so because he can't go anywhere by himself. He wants to be able to jump in the car and just go somewhere although when asked where he wants to go he just screams "I don't know!!" He does understand that he can't go anywhere by himself - not totally anyway - but I think he's just tired of being in the house and tired of being with the same person day after day.

So today, Joseph and I took him to Dave and Busters. D&B is basically an adult arcade and you should have seen Kevin's face when he was walking closer and closer to the game area and was finally figuring out what we were doing. I wouldn't tell him for the last couple of days where we were going, just that it was a surprise and we were going to a fun place.

And he had a blast. We were there close to three hours. I did have to medicate him twice, but he didn't want to leave no matter how much pain he was in. Finally though, he was in sensory overload and we did go home, but after we were home a bit and he rested - he wanted to go back!

For me, it was so great to see him having fun, but it did make me think again of how sucky his life really is. Putting aside all the medical stuff - he has no friends, he is usually in too much pain to do anything and if he felt well enough he has no way to get out and about without his mommy taking him. Pretty bad for a 21 year guy.

Hopefully, once the plate is put back in his head, he will feel better and can start doing things. Things with the Wounded Warrior Project and other wounded soldiers. Maybe he and Joseph can go do things too; fishing, concerts, who knows...

Tomorrow we are supposed to go to a picnic with other wounded military personnel. I really want him to go and start doing things like this, but he doesn't want to. He's just not a picnic kind of guy so I imagine I will have a fight on my hands in the morning. Keep your fingers crossed.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sun Jun 06, 2010 11:47 am

SUNDAY, JUNE 6, 2010
Day 737 - Jun 5, 2010

Well, we made it to the picnic, but by the time we got there it was pretty much over. Kevin was just in a bit of pain most of the morning and there's just no sense even trying to go anywhere when he is already hurting. So we got a much later start than I had planned on.

Other than that, we did nothing today. We came home and played a few games of Skipbo and that's about it. He was hurting pretty bad most of the rest of the day so he mainly stayed in bed.

So I guess I'll just answer a few questions/comments:

Hallie - my thoughts are with you and your husband. I feel confident you will have the strength to get through it - it always just seems to come from somewhere!

Janna - I gave a lot of thought to what you said about me knowing the real Kevin more than a therapist that spent an hour and a half with him. Truthfully, I have given a lot of thought to that whole episode period.

I think that Kevin does know the bulk of what we are saying/doing. I think he understands the important parts of a conversation and let's the unimportant parts fly by because who really cares, right?

For example: the story mentioned a woman named Anna who lost a ruby ring and she cried. When asked if her name was Anna he said yes. When asked later if her name was Amelia he said yes. Who cares right? When asked if it was a diamond ring he said yes. Later when asked if it was a ruby ring he said yes.

He knew the story was about a woman who lost her ring and she cried. He did tell us that, but he didn't know the specifics and I think it's partly because it wasn't important to him.

Now if it were Breezy and she lost her red ring he would know the who, what, when, where and why. But he really didn't care about the person in the story because it didn't affect him.

Now obviously he is cognitively impaired. If he weren't - if he were completely better - he would remember the person's name, the kind of ring, etc. And I am aware that he is impaired and it didn't come to me until way later that he does understand the things that do affect him. He does understand the things that affect myself and Breezy. The things that are important to him.

Something else that made me think about his memory is getting gas yesterday. We got gas and although I never look at the price, for some reason I did while I was pumping. Probably about 15 minutes later, when we were on our way home, Kevin said 2-6-7. I had no idea what he was talking about so he made the sounds and the hand motions of someone pumping gas. I still didn't know what that had to do with it, but then it clicked. $2.67 per gallon. He remembered how much the gas was. So if he can remember that 15 minutes later he obviously can recall things that are important to him.

I don't know...maybe I am just grasping at straws, but it just seems to me that if he can answer appropriately a lot of the time, he has to know what's going on around him. Ruby or diamond ring be damned.

Chalkie - thinking of you and Carol often. Will email you soon!

Kathy in IA - I have purchased those books at Walmart for Kevin to work in, but he absolutely refuses. I think it's because they are children's books. The therapist mentioned some adult papers so hopefully we get them before the year 2020. (yes - some VA sarcasm - still no bed, still no one handed soap dispenser, no reverse osmosis, and on and on)

Lorraine - I can't believe that Rick got a tattoo of Howard the Duck on his chest, lol. He is such a character!!

Karen in Vancouver - thanks for your comments. Kevin and I have started to slowly read the blog from the beginning too. It's amazing how many things I was told that I didn't retain (due to probable shock). Honestly, I didn't remember that the doctors cut out part of Kevin's brain - all this time I thought it was just dying off and reabsorbing into his system. It makes sense though. The CT scan shows an exact line where it was cut and I often thought that was weird.

Ok - this has become a book. Off to bed for me...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue Jun 08, 2010 9:30 am

TUESDAY, JUNE 8, 2010
Day 739 - Jun 7, 2010

So I guess Kevin is having his skin expanders put in on Thursday. I knew the surgery was tentatively scheduled for the 10th, but I never heard anything so I called the burn clinic today and found out it is on the schedule. Now we have to hurry and get all his pre-op testing done tomorrow. I don't know anything yet about how long he will be in the hospital, but we will probably get some answers tomorrow as we have an appt at the burn clinic in the early afternoon. I sure hope Kevin can handle all of the pre-op stuff at one time. I would prefer that they admit him a day early (unless this is an out-patient surgery?) to do all the blood work, scans, etc. This would give him a place to rest in between all of the tests, but I'm not sure if they will be willing to do that. I guess there's no harm in asking tomorrow though, right?
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed Jun 09, 2010 10:11 am

WEDNESDAY, JUNE 9, 2010
Day 740 - Jun 8, 2010

Yes! We are being admitted to the hospital tomorrow and the charge nurse told us that she would just do all of his pre-op testing when we got there. I guess they are only taking blood - which really is the hardest of it all - but at least we didn't have to go down and do blood work in the lab.

After we had our doctor's appointment and visited the burn ward, we went and sat with Maritza and Jose for a good hour or so. Joel was having surgery today so they were in the waiting room. I sure missed them and so did Kevin. It's been rough being mostly homebound so today was a nice day visiting with friends.

I did have a talk with the pain doc too about Kevin's pain level. Both Kevin and I are very anti-pill, but this constant pain thing has got to go. The doc wants me to check Kevin into the hospital for 10 days (not this trip though) and we will start the detox process. We will know then if it's real pain in the head or if it's addiction. He wants me to think about it so I am going to sit down and run the pros and cons of doing it now vs doing it after the plate is put back in. No matter which way I swing - something has to be done. He can't continue to live like this when it's not really necessary.

So anyway, Michelle Long - you asked when Kevin would be getting the plate put back in and he will have to have the skin expander in for a minimum of two months. On the day it comes out - the plate goes in. This is all barring any infection, which as far as we know he is free of at this point.

IF his head gets infected with the expander, it will be removed and we will have to wait 3-6 months before it can be re-implanted. Let's just hope that doesn't happen!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Jun 10, 2010 1:25 am

THURSDAY, JUNE 10, 2010
Day 741 - Jun 9, 2010

We are ensconced in the hospital and Kevin is trying to get some sleep. They had to put him in a double room this time, but no one is in there with him so I commandeered the other bed. I decided to stay tonight as his surgery is in the morning sometime so I actually have a bed instead of a cot - yipee!

Darn. They just came in and said the blood they got was no good so now they have to start sticking him again. It is so difficult to get blood from him because his veins are just so used up. We have to get some though, no matter how many pokes it takes. This is making me wish I would have just tried to do some of it yesterday. Grrr...

I guess I need to wrap this up as the nurse needs some help. Not much else to say anyway.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Jun 11, 2010 9:37 am

FRIDAY, JUNE 11, 2010
Day 742 - Jun 10, 2010

Ok. So although Kevin did very well in surgery, he just won't wake up. I am only allowing myself to believe that it's because he did have a lot of anesthesia as it was a very lengthy surgery with multiple surgical sites.

BUT - in reality - there is a chance it could be because of the expander having to be placed over the shunt tube. There just wasn't anywhere else to put it. I was very happy to hear that the neurosurgeon sat in on the whole entire surgery (4 1/2 hours) and that the tube has actually grooved itself into Kevin's skull, but it still could have put pressure on it that will make it where the CSF can't travel down to his belly. I will know more in the morning as he surely will be awake by then if it's just anesthesia.

I did come home tonight. I wasn't going to - it was very hard to do - but he was so out of it there was no sense me staying and torturing myself. He was a bit combative when he would rouse for 30 seconds or so and both Breezy and I had to leave for a bit when he shoved her away. He didn't realize he was doing it, but it was like deja vu. It was exactly what it was like in the beginning. We both had to step out and just cry for a bit.

But, we are going to end on a good note. Kevin really does look great. His ear is normal shaped now and his eye looks fantastic - and it will look even better once the swelling goes down. I can't see what his neck looks like as it's bandaged and I can guarantee he will be very deformed in the head (one side sunken and the top abnormally large over time), but still...he looks wonderful to me!

So ok, Buddy...it's time to wake up now...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat Jun 12, 2010 1:09 pm

FRIDAY, JUNE 11, 2010
Another Update

Kev just called me on the phone and is agitated that they weren't on time with his meds. All is back to normal, hehe. I don't know if I ever explained but if the nurses are even a minute late - and he has a watch to time this - he is screaming "PILLS" and ringing the bell like a mad person. He really does have extreme OCD.

Well, gotta get to the hospital. They are moving him back to his room in a few minutes.

YAY!!!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat Jun 12, 2010 1:10 pm

SATURDAY, JUNE 12, 2010
Day 743 - Jun 11, 2010

Kevin is doing fantastic tonight. It took him until about 3pm to really wake up and move around, but once he did he started eating and drinking and he even got up and we went for a couple of walks.

So I have a couple of pictures for you guys. The first is what Kevin's eye looks like right now (excuse the black line in the photo. I am too lazy to fix it):

I can't wait to see what it looks like once the swelling goes down!

And this next one? Oh yeah. We have some pretty funny doctors here at BAMC. Seriously, I am gonna kick some butt when I find out who was behind this, lol. I can only assume that this is the way someone is playfully getting back at Kev - the ultimate jokester. He always makes everyone laugh and I can't tell you how hysterically we all laughed when we saw this:

Yep!!!! When they shaved his head they left a rattail!!! When Kevin was walking it came to our attention and there was a whole bunch of nurses in the hallway and we were all doubled over with laughter! Kevin just kept shaking his head in mock disgust. It was just so flippin funny!

I'm anxious to see if they left something else under that bandage, hehe!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sun Jun 13, 2010 12:27 pm

SUNDAY, JUNE 13, 2010
Day 744 - Jun 12, 2010

Kevin is doing pretty well today. He did sleep quite a bit for some reason, but we did manage to go down to the cafeteria for lunch.

He has a nurse all to himself tonight and the guy planted himself in Kevin's room and was doing things with him. I asked Kev if I could leave early as I had laundry to do and he was having such a good time with Glenn that he didn't care at all. Kev was in the process of showing him all of his videos and they were even skimming parts of "Out Cold" - Kev's favorite movie of the moment. This guy was really great with Kevin when we were in-patient the last time so I was really happy to see him tonight.

I did think we were going home today, but obviously we didn't. I am hoping we get to go home tomorrow, but I'm not sure. He seems well enough to me, but I heard (in passing) that they were keeping him partly so that I could have a break. I don't know if it's true, but I'm not gonna lie and say I don't appreciate it. It's been very rough lately dealing with all of the pain issues and being homebound. Kevin has really been miserable a lot the last couple of months and it just weighs so heavy on my heart to see him like this. I just wish there was a way to make him feel better.

So anyway, I am going to sign off early. Finally - FINALLY - I am going to watch Avatar! I was so adamant that I was going to see it at the theater in 3-D, but Kevin refused to go and there just wasn't time for me to get out and see it without him. Crazy, huh? It was in the theaters for months and months! But no matter - I am already about 20 minutes into it and am so impressed with what I'm seeing so far.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Mon Jun 14, 2010 9:35 am

MONDAY, JUNE 14, 2010
Day 745 - Jun 13, 2010

Today was pretty rough. Kevin was just angry all day. I got tired of it a few hours into the afternoon and left. I just can't sit there and be treated like a piece of crap and he needs to learn it.

Unfortunately, he's been angry/miserable for a while now and it's just been getting worse and worse. I am sure it's that he is completely aware now of the changes in his life. It's also hard for us to see an end to the surgeries and therapies and it's hard to believe that we will ever have some form of normalcy.

In all honesty, for the last two years Kevin has lived in this haze of sorts that kept the reality of his life from him and the haziness is now gone. Sure he had moments where clarity reigned, but it always left as fast as it came.

Now he sees it. And there's no escaping it. And now we both just need to figure out how to deal with it.

I can only hope we figure it out rather quickly. There is absolutely no pleasing him and neither one of us can live this way much longer.
Sent via Twitter by @chalkperson

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