Kevin Kammerdeiner, the story of a Wounded Warrior.

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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Fri Nov 13, 2009 1:09 pm

Just a photo today, for those that remember how he looked a year ago I think this is quite incredible...
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Re: Updates on Kevin, CMG's Hero...

Post by Corlyss_D » Mon Nov 16, 2009 3:53 am

Wow! Is that hair his own? He looks great!
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Re: Updates on Kevin, CMG's Hero...

Post by living_stradivarius » Sat Nov 21, 2009 1:03 pm

Amazing recovery from a year ago.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Sat Nov 21, 2009 2:32 pm

WEDNESDAY, NOVEMBER 18, 2009
Day 538 - Nov 18, 2009

Guess what we picked up today?! Kevin's new bike!! I wish I had some pics to share with you, but it was nearing dark by the time we got home from the bike shop and I felt it was more important to get him out on a ride rather than run in to get my camera. Man, he is so stinkin' happy! He is just beside himself.

So, assuming we ride again tomorrow (and that's if this body - that is bound to be sore - can handle it!), I will take some pictures then. I purchased a book at the bike store that is an in-depth reference guide to all of the paved trails in FL and I am looking forward to us checking a bunch of those out. I have to get in better shape first though, lol. We only rode maybe a mile or so today and my thighs hurt so bad. Kevin, on other hand, coulda probably rode another 10 miles.
THURSDAY, NOVEMBER 19, 2009
Day 539 - Nov 19, 2009

We had another good day today. Kevin had to go to therapy and have an evaluation done and he walked on the treadmill for 6 minutes and rode the stationary bike for 11 minutes. He did really well and he loved seeing all of his 'old friends' at the office.

After that we came home and had a quick bite to eat for lunch and then we took a bike ride over to Chris's house. (she is the Marine's mom). They live about 3 miles away and Kevin did the whole trip without a break at all (and I woulda died for a break, lol!). Chris had just ridden her bike over to visit so it worked out well that we just followed her home.

The weather was truly beautiful here today in FL and you couldn't have asked for a better day to ride bike.
And I do agree Kevin needs an ID bracelet and I have already sent a message to find where to get one. I'm not too worried about him going on a bike ride without me knowing though. There are many things that he needs help with - even actually getting down onto the seat, but the most important thing is that his sneakers actually lock into the pedals and Kevin cannot get his right leg into the lock by himself. Truthfully, it takes me 5 minutes or so to get it in as he can't help hold his leg in place. At this point, he would not be able to get anywhere if his shoes weren't locked in as his foot just can't stay on the pedal. I'm sure as time goes on he will get more capable of doing at least some of these things by himself, but I think it will be a while.

And now I need to get the dishes done. Our dishwasher has been broken since before we left for TX and they are finally coming tomorrow to fix it. The whole family came down for dinner and there are still a few dishes that need done.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Tue Nov 24, 2009 11:45 am

MONDAY, NOVEMBER 23, 2009
Day 543 - Nov 23, 2009

Kevin woke up this morning with his left ankle hurting really bad. I have no idea what he did, but he can't even put any weight on it. I can't imagine what happened as he didn't get out of bed all night long. It's very strange. Anyway, if it's still hard for him to bear weight in the morning, we will go for an x-ray.

So we did nothing today. He only got out of bed one time and wheeled around for a while, but then he got back in and has stayed there all day/night. I even laid out dinner on his bed and we ate there, rather than him have to put his weight on it. He's just put on too many pounds for me to help lift him out of bed and into his chair. I could do it when he weighed 125, but over 160? No way!

Speaking of weight, I am trying to get Kevin to diet. All of his pants are too tight again. I am seeing the beginning of a very bad trend and it needs nipped in the bud right now. I just don't know how to do it. It's hard not to eat when you're bored and I suspect that is part of the problem. Once his ankle's better we can get back on the bike and that should help some, but it won't take care of it all.

My biggest fear is him being 300 pounds and falling down. I can't imagine how I would deal with that (other than to call 911) - I just don't want to get to this point though.

And yesterday I went and bought some Tylenol. I have decided we are not going to use the Oxycontin IR (immediate release) for breakthrough pain any longer. I want to get a jump on the detox and if I can at least pull out a few pills a week, it's a start. He has very little excessive pain anymore anyway - so I think we will be safe with the Tylenol. I just hate all these pills...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Wed Nov 25, 2009 2:30 pm

WEDNESDAY, NOVEMBER 25, 2009
Day 544 - Nov 24, 2009

I took Kevin for an x-ray today, but the radiologist wants us to come back for a CT scan tomorrow. He feels there is probable cause for a break and wants a clearer picture. I gotta be honest, I have no idea how I am going to handle a broken foot. It took over a half hour of struggling just to get him into the shower tonight. (I would've let it go, but he didn't get one yesterday).

Now that he doesn't have his 'good' leg, I can see how truly bad his right leg is. I can't figure out how he can even walk on it. He cannot hold himself up on it, that's for sure. This basically means that I am lifting him up to get him into his chair. I am so glad we still have the van too. At least I can transport him in his wheelchair - making a trip out so much easier.

And I want to thank everyone for all the emails regarding Kevin's pain meds. There are so many that I am just going to put it all here rather than answer individually as there isn't time for me to do so. (and I truly thank everyone for all of their concerns!)

So basically, I want to say that I didn't make the decision to take away the oxycontin on my own. I did ask the pain mgmt doctor if I could do this. I should also say that Kevin is still on a high dose of oxy that is a sustained release pill so that it lasts all day/night. The ones I took him off of are just little 10mg tabs that are for breakthrough pain. Kevin rarely has breakthrough pain any longer so days went by when he wouldn't even need any. This means that he won't suffer withdrawal from me giving him Tylenol instead.

He also won't get the Tylenol too often. At the very most - it would be once a day. But truthfully, it won't even be that frequently.

And I have also heard of people dying from taking too much Tylenol. I keep a hawk's eye on Kevin and all his side effects, so we should be ok. Like I said, he really won't be taking it all that often anyway.

As for the suggestions of different pain medications that are better for you - I will keep a list and discuss them all with the pain management doc. I really liked the woman that we saw last week and she seems to really be on top of things, so hopefully we can come up with a new plan. We will be waiting until late Jan or Feb to start detoxing Kevin and I should insert that I doubt we will see her before then.

And now I am going to send a message to my girls at work - I promise to make y'all stromboli and stuffing balls when we come home (PA home) next summer, lol. I miss you guys so much!

And on this week of thanksgiving, I want to reiterate something I used to say often back in the beginning. ALWAYS tell those you love that you do love them. Tell them you appreciate them too! You just never know when you won't be able to see them anymore - whether it's through death or an emergency that takes them away for good.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Fri Nov 27, 2009 7:18 pm

FRIDAY, NOVEMBER 27, 2009
Day 546 - Nov 26, 2009

I hope everyone had a great Thanksgiving. We did. Great food, lots of family arguing and did I mention great food?

Kevin's foot doesn't hurt anymore so I have been 'yelling' at him all day to stay off of it. He just won't listen. I sure hope the orthopedic surgeon can get us in for sure tomorrow and do whatever needs to be done with it. Kev is just not understanding the need to stay off it.

We didn't really do anything today. Most of the family played on the Wii all day and even Kevin enjoyed it. He had a really good day.

And my nephew Anthony came down to stay for a couple of days and he and Kevin got along really well too.

I have been wondering myself if the bike is the reason Kevin's foot got fractured. I think we will find out when we see the surgeon. That will really stink as it is the one thing he is enjoying above all others right now.

As for us riding on the road - we don't have a choice. There are no trails in our development and if we are going to go anywhere else, we need a truck. I can get his bike into the van with a LOT of finagling, but if his is in there, mine can't fit.

I will say that in some ways now Kevin is like normal. When it comes to riding, he is extremely conscious of the traffic and hears it early and moves over close to the edge and slows way down. I also stay on his butt (but I had to back off to take the picture) as I am a natural born worrywart when it comes to this kid.

Also, I know someone responded about this, but there is no way his foot can fall off of the pedals. He has special shoes that lock right to them.

I think it's all going to be a moot point for now anyway. It doesn't look like he'll be riding for a while.

And I think I will get to bed now. I have to get up early and get a new tire put on the van and then take Kev over to the hospital (I hope anyway).

Breezy - I hope you had a great Thanksgiving! It wasn't the same without you here! Love you!
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Sat Nov 28, 2009 3:54 pm

SATURDAY, NOVEMBER 28, 2009
Day 547 - Nov 27, 2009

I called so many tire places to get a new tire today and nobody has one that size? What the heck?!!

I had to give up after a while as the podiatrist was waiting for us to get to the hospital. Because Breezy had my car keys in Texas (which I got in the mail today - my parents searched our house for 2 months and all that time they were in Breezy's coat pocket, lol), we were totally car-less so Parshall (Kevin's aide) ran us to the hospital.

It must have been a resident that we saw because we have to go back on Monday and see the attending, but she did give Kevin a cam-boot for now. She told us there is a fragment of bone that is just floating around near his ankle and she thinks it's been there all along. She said it's possible the bike ride, or even if him walking in the shoes made for the bike, might have aggravated it. There is no way to know for sure. He could've slept on it wrong too.

Ann - I will let you know who the doc ends up being. I will try to request the ones you suggested, but we'll see. I am so glad that worked out for Mark! Miss you around here!

So Kev pretty much has to lay around in bed as much as possible. I haven't figured out what this is going to do to our therapy schedule yet. I guess we'll figure that out on Monday.

And now I think I will go scrap for a bit. Hope everyone had a good Black Friday. I regret not being able to catch some of the sales, but I would never go anyway as I can't stand the crowds.

(Cathy M - I hope your mom is doing ok? And Kristen - when will you hear the test results of your Mom's?)
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Sun Nov 29, 2009 1:59 am

SUNDAY, NOVEMBER 29, 2009
Day 548 - Nov 28, 2009

We didn't do a thing today. I am trying to keep Kevin in bed as much as possible so that he doesn't use his foot/ankle.

I am a little concerned about giving him a shower though. It is such a HUGE struggle to get him into his shower chair with this broken ankle. His shower is large, but it's just not large enough for me, his wheelchair, him and the shower chair he sits on. I think I am going to request a roll-in chair that he can go directly from his bed into the shower and remain in while showering. I hope I can get one quickly (or should I say I hope I can get one period? I'm not sure about the rules on these kinds of things).

And in other news...today was Kevin's last day in the Army. He is officially medically retired. I am glad because this puts him in a much better financial position and (even better) we are hoping that he can now have some of his therapies at home. We aren't sure about this part, but it's something that may be available to him. That would be so great - maybe we wouldn't be so exhausted all the time from running 2 or 3 times a day down the road.

And it's kinda sad too. I know that Kevin intended to make a career out of the Army, but he has lost the chance to do so. I suppose you could look at it as he's lost a lot of chances and possibilities...but then again, you can flip it and look at how much he has gained. How much he can do because of our sheer will and determination to get him better.

So now I need to learn a whole new system - the VA. I know some as we have sorta been in the system for over a year now, but when it came to getting things paid for as active duty - it just happened. Now there is a process and I need to learn it quickly. By Monday...before we see the surgeon...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Tue Dec 01, 2009 2:37 am

TUESDAY, DECEMBER 1, 2009
Day 550 - Nov 30, 2009

Well the surgeon's appt didn't come off as great news. (Ann - we got Dr Bernard; one of the guys you mentioned!). The doc told us that Kevin has multiple fractures and he figures that some (if not all) of it had never healed from the original date of injury.

Anyway, he said that Kevin's ankle bone has about 1/3 of the bone fractured off of the rest of the bone. There are also many other smaller fractures. Any of these can be causing pain and he suggested that we just let it go for a few weeks and see what happens.

He told us to let Kevin walk and do whatever because no amount of staying off of it is going to fix the issue. He told us that Kevin may feel better and not need surgery for a long time yet. It's really all about how Kevin can handle the pain.

BUT - Kevin will need surgery eventually. It may be next month, it may be next year, but it will happen someday.

When that day arrives, he would like to go in and see if he can clean up the fractures using various screws. If that doesn't work, he will just have to fuse the ankle bone to the shin bone. That would mean that Kevin would not be able to bend his ankle at all. He did tell me that it would affect his walk a little bit, but not much.

Damn! This is really not what we wanted to hear. Kevin was so upset when he heard the word surgery and I don't blame him. This is all just so exhausting.

When I think of all the things we still need to do I just want to sit here and cry. Here is a list of things I can think of (just off the top of my head):

possible foot surgery
facility to teach Kev independence
see new neurosurgeon
see new neuropsychologist
put Kev through detox
need to fix his eye surgically
burn scar laser treatments
looking into hyper baric treatments
find a cognitive rehab program
botox in his hand
(and let's not forget our daily regimen of therapy, therapy and more therapy)

Every time I formulate this little plan in my head on when to do certain things, all kinds of crap comes up emergently.

I just wish we could just live. Just go about our days like normal people. I think it's one of the reasons Kevin is always depressed here. When we are in Texas, our schedule is lighter and we can sometimes do things that are fun. Here, we are just too tired. There are so many therapy appts and doctors appointments that we are too exhausted to do anything else - even on the weekends.

Frankly, I think I just need to sit down and figure out our priorities. Like OT - is it really worth it? It's been 18 months today since he was wounded. The arm is no better now that it was. He still has basically no control. So why are we spending so much time trying to fix it? Really?

I think we need to find some time and energy to live a little. Not just exist for doctors visits and therapy appointments...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Wed Dec 02, 2009 10:20 am

TUESDAY, DECEMBER 1, 2009
Day 551 - Dec 1, 2009

A couple of things happened today. First, I left Kevin with his aide for over 4 hours and went shopping. I did the bulk of our shopping and it felt great to get away for a few hours. I would love to do this at least once a week, but I have said I would so many times and I never force myself to go so we shall see...

Second, and y'all better sit down for this one - I got Kevin a cat. To those of you that know me, I'm sure you have each grasped your chest in near heart failure, but I assure you - I did it. Here's a picture as proof:



It doesn't really have a name yet. They called it Princess at the shelter, but I just can't see Kevin having a cat named Princess. I think we are going to have to name it one of the words Kevin can say so I am guessing "NO", hehe. It's what I have been screaming at it all night so it probably already thinks that's it's name anyway, lol.

So anyway, it's a fully grown cat, already litterbox trained and very affectionate. Kevin's face just lit up like a Christmas tree when I walked into his room with it, so it's probably worth it (I will agree or disagree after it's been here a little bit longer, lol)

And third, I made an appointment with Kevin's therapists for Thursday and we are going to discuss what he really needs vs what we have been doing all this time.

I agree with everyone that a change needs to be made. We have to start having some fun, but first we need to have the energy to do so. This means eliminating some of the things on the list and only doing what we need to do for a little bit.

I guess we'll see what the therapists have to say and go from there...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Fri Dec 04, 2009 10:41 am

FRIDAY, DECEMBER 4, 2009
Day 553 - Dec 3, 2009

I met with the therapist today to discuss whether OT is really necessary and she pretty much agreed that Kevin is not really going to ever regain any real use of his right arm/hand. We feel that speech and PT are still pretty vital, (although he can't have PT until he can bear weight on that left leg), so we are going to continue those two, but discontinue OT. I hope I'm making the right decision. I worry about taking any chance away, but if I'm honest with myself - there really doesn't seem to be much of a chance.

However, we are going to try to order a robotic arm that will do therapy on it while Kevin is home. This will keep the spasms somewhat in check and who knows...maybe it will make a difference.

So this will take us down to having therapy only 3 days a week for two hours a day. I still would love it if we could get either speech or PT to come to the house as that would free up even more time. But we need to get this retirement really settled first before trying for anything else. I know Kev was supposed to be retired on Sat, but I'm not sure if it really happened? Various people have told me there was a glitch? Who knows...

So I am going to end with some photos. I promise Kevin is dressed in the first one. He's just in his underguchies, lol.



And we decorated our tree today. We took a long drive around our development this evening looking at Christmas lights too. Kevin told me he wants to decorate our house with lights, but I have never done that before. Gonna have to really scope out how high I would have to go up the ladder first. I'm not big on heights...

And now I am hoping to go to bed. I don't think Kevin ever went to sleep last night. I finally went to bed at 7:00 this morning and when I woke back up at 8:30 he was still awake. He didn't nap yesterday and he didn't nap today either, so hopefully he goes to sleep soon. It's already 2am though and he's wide awake so I'm not sure. I just don't know how he does it. I guess it's nothing he's trying to do though - I know it frustrates him to no end when he can't sleep. Poor thing...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Sun Dec 06, 2009 2:28 pm

SUNDAY, DECEMBER 6, 2009
Day 555 - Dec 5, 2009

Princess is finally sleeping in Kevin's room! Thank goodness! Kevin is leaving his door open a couple of inches so that the animal can get out and so far, so good. I did discuss putting in the pet door and he liked that idea. Now I just need to find someone to do it. I need to find a handy-man anyway. There are so many things that need done.

And Kevin got his retirement flag in the mail today. I have to say that I think it should have been presented to him. I mean geez...they send his Purple Heart in the mail and now they send his flag too. Oh well, it's been like that since he got wounded so I shouldn't be surprised. Do you know that we have seen NO ONE from his unit since we came to FL? (with the exception of Rigney at the PH ceremony and he had to pay his own way from Germany!) Not one visitor from the 173rd. I think that's sad. Ah well...I guess it just doesn't matter now, does it?

So I did figure out why the country is so broke. It's paper. Yep. Good old mail from every government agency. I have been in our den for 4 hours now opening mail. I hadn't even gotten it all opened from all the previous trips and now I have the last two months added on to it. Let me tell ya though - NUMEROUS copies of the same letter from the VA, NUMEROUS copies of the same letter from the Army and NUMEROUS copies of the same letter and pamphlets on how to get a job from SSI/Disability. It is no wonder our debt is so high. Between the paper and the postage...unbelievable!

But anyway, I got about half of it done. There is just so much mail in there. A lot of it is just junk from when you buy a house, but you have to open all of it just in case.

And other than that we didn't do much today. We did go to Home Depot to look at Christmas decorations and there I was looking at the pretty angels and the deer lawn ornaments and Kevin spotted these penguins in a blimp and that was it - he had to have it! I sometimes forget that he isn't always 21 mentally because I am seeing the child less often, but then he goes nuts over children's decorations and it reminds me. So yes, we have penguins for our front yard, lol. If I can ever get them put together and placed outside, I will post a picture. I know Kevin will be one excited little boy/man. Hopefully I can get it done tomorrow...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Sat Dec 12, 2009 1:46 pm

SATURDAY, DECEMBER 12, 2009
Day 561 - Dec 11, 2009

Today we intended to go to the mall to exchange the jeans we bought Kevin a couple of weeks ago to yet the next size. They were too tight when we got them, we just never had the time to return them.

So we drove over and when it took us almost 20 minutes to drive a half mile around the mall, we just went home. There is no way we are going into that mess, lol.

Other than that, we did nothing today. It was kinda yucky here so it was one of those days to just stay in and veg. I took a long nap this evening - I have just been so tired - and I vaguely remember Kevin getting up and turning the lights off in the living room (where I was napping) and I think I even heard him whisper "I love you, Mom" which is just so dang cute, huh?

I am going to answer just a few more of the questions and then head to bed.

First, thanks to Ida and Long Time RN for the UV Block clothing suggestions. We already ordered a few Solumbra pieces a long time ago and the VA purchased a few items from Dick's Sporting Goods too, but Kevin won't wear any of it. It's been ok to start doing small doses of sunlight to start having his skin adjust to it, but we aren't usually outside for any length of time. We also use 65 spf sunblock too.

Tracey from PGH - I wish I knew how Kevin could handle listening to heavy metal, but in all honesty, he doesn't do it much. He still rarely listens to the music in the car, but he was able to handle the concert in SA? It doesn't make sense to me at all. The only thing is that the concert was outside and maybe that makes a difference? Sometimes sound in an enclosed area is just so much more enveloping.

(oh and Tracey - we got our decorations at Home Depot)

Mary - I thought about taking Kevin to see the concert (TSO), but I asked and he said 'no'. I'm glad now because all of the lights could have caused a seizure. It's one of the things we need to be careful of with the brain damage. Normal lights would be ok, but the strobe and lasers in a close space might be scary.

And I forgot to mention that Kevin has been saying some new words lately. He has learned:

One
Two
Fan

Those three are the fan and the speeds in which he wants it on. I don't allow him to use his fingers to tell me which speed - he has to say it.

Open
Shut
tree

He has been trying to pick up some new words a lot lately. Both Breezy and I tell him that that part of the brain must be reconnecting. One nice thing (and possibly helpful) is that he and Breezy probably talk at least an hour a day on the phone.

Ok - off to bed for me!
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Fri Dec 18, 2009 2:32 am

THURSDAY, DECEMBER 17, 2009
Day 567 - Dec 17, 2009

Kevin has been in a grumpy mood the bulk of today. He was so angry earlier (and I have no idea why?!) that he went into his room, locked the door and barricaded it with his wheelchair. I had to go around to his french doors to get into his room - luckily I left them unlocked earlier today. I do try to respect his privacy, but only to a point. I tell him he can't abuse my trust, but I don't think he understands what that means.

So anyway, I finally grabbed a few of my scrapbooks and we lay on his bed and just looked through them. A lot of the old photos of him and the rest of us while we were younger made him finally smile and even laugh a few times.

I just wish I knew why he was in such a mood today. Who knows...I guess we've all woken up on the wrong side of the bed and maybe that's just all it was. Tomorrow will tell, I suppose...
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Re: Updates on Kevin, CMG's Hero...

Post by Corlyss_D » Fri Dec 18, 2009 4:53 am

I wonder what's not to be angry about. 21 years old and every day a titanic struggle to come back from the dead. Incredible courage, that young man.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Fri Dec 18, 2009 10:49 am

Corlyss_D wrote:I wonder what's not to be angry about. 21 years old and every day a titanic struggle to come back from the dead. Incredible courage, that young man.
He's had a tough week, I chose not to post the other entries as it was just too sad to read, but, this one sums up their dilemma perfectly, his mom, Leslie, never gives up, and Kevin is an inspiration to us all...please think about him during this Holiday Season, and also all the other Soldiers who will spend Xmas in Afghanistan...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Wed Dec 23, 2009 10:13 am

WEDNESDAY, DECEMBER 23, 2009
Day 572 - Dec 22, 2009

First, I gotta tell you that Kevin truly did that scrapbook layout all by himself. He is just like his mama and REALLY anal about exact placements. As I was attaching the photos with glue dots, I didn't do it right and it took forever to get them exactly where he wanted them. It was kinda hilarious.

So I also have to tell you that Kevin said a whole slew of new words in the last few days. I was on the phone the other night (Hi Linda!) and he called me downstairs to say 'star'. He was watching Family Guy and the woman was putting the star on the tree. He just said it - without any teaching involved.

Today he came out with Pap (my dad), I love you, Pap (very hard for him to get words together that are a new combination), eat, cookie, Josh (my niece Chrissy's boyfriend), Dawn (my other sister), Kammerdiener (ok - so that doesn't sound exact, but it's way close enough, lol), lights and hold on. He is trying to repeat things often now and he is even singing as best he can whenever the radio is on and he knows the song. You should hear him sing 'Happy Birthday' - he does it so well! If I could ever find the cord to my video camera, I will take some videos. It's been so long, but I haven't seen it since we moved from the Fisher House.

We did have speech therapy yesterday too, but Kevin was really mad. I guess the therapist spent almost the whole time writing notes. He also talked real slow and Kevin feels he is talking down to him. The one thing I don't do is slow it down. We talk normal and I only emphasize words when he is struggling to learn them. I talked to the therapist after I had Kevin leave the room, and I talked to Kevin on the way home because I know it's how you teach stroke patients, so hopefully they can meet in the middle. I just don't want Kevin to get so mad that he won't go back, kwim?

And lastly, I want to thank everyone for the well wishes for my dad. It's just not good. He has the option of either doing nothing and allowing the cancer to take over, or having surgery knowing that the odds are better that he won't make it through either the surgery itself or the recovery. They don't feel he is healthy enough to handle it.

So it's a decision my father must make and we all need to accept whichever he chooses. I do have to say though that it will be a less rosy world without my dad in it - even if he does drive me nuts sometimes.

Ah well, I don't want to get all maudlin, I'm sure it will all work out...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Wed Dec 30, 2009 10:58 am

WEDNESDAY, DECEMBER 30, 2009
Day 579 - Dec 29, 2009

Kevin and I are kinda fighting tonight. His eating habits are totally out of control. He weighs almost 180 pounds and I am putting him on a diet. He's not liking it though - not at all - but if I start slow I am hoping it won't be too bad. So after eating two burgers, 2 bowls of ice cream, 4 pop tarts and some peanut butter toast, he isn't allowed to have any more. He is so mad he just stomped to his room and slammed the door. I really hate to do this, but he is putting too much weight on way too fast. It's going to affect everything from his good leg not being able to carry his weight to his sugar level.

Looks like life is gonna be rough for a little bit.

Truthfully, we didn't really do much today. We only have therapy Mon and Wed this week, so I had planned to go to a movie and leave Kevin with his aide. Unfortunately, when I got to the theater the line was a mile long and there was nowhere to park so I just took a drive to an area I had never been before and then came back home. I just plain forgot the kids are all home from school this week so I will wait until next week. There are so many movies that I want to see right now, but my main goal is Avatar in 3D and I am determined to see it.

And that's pretty much it, so I guess I'll go and read some of my book. Before I do though - Tracey in PGH - no, I wasn't aware that a photo of Breezy and Kevin was in the Post-Gazette on Sunday. If it's the picture I think it is, it is my absolute favorite. Mike and Rebecca (reporter, photographer, from the PPG - such wonderful people!) just sent me some of the photos they had taken for the paper and there was an 8x10 of that photo in the pile. I just sat and cried when I opened the envelope and saw it. It's really such a bittersweet photo, huh? It really shows how much the two of them love each other, yet it also plainly shows how severe Kevin's injuries are. Mostly I don't see what he looks like anymore, but sometimes a photo shows it and it always comes as a shock to me. It's kinda like when (once in a while) I catch a glimpse of Kevin out of the corner of my eye and I gasp! I think "Oh my God! Look what happened to my son!" It's all I can do in those moments to hide what I am seeing/feeling. I usually run upstairs and just cry when I see the truth so boldly. Thank goodness I don't see it often, eh? I'd be a blubbering mess. And let's be honest - no matter how lucky Kevin is to be alive, he still had a horrific thing happen to him that has left scars, both physically and mentally, that will never go away.

The poor kid...
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Re: Updates on Kevin, CMG's Hero...

Post by Werner » Wed Dec 30, 2009 7:34 pm

......................and poor Leslie, and Breezy.......
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Re: Updates on Kevin, CMG's Hero...

Post by Corlyss_D » Wed Dec 30, 2009 8:41 pm

Werner wrote:......................and poor Leslie, and Breezy.......
Incredibly strong though the mom is, she's in serious need of respite care without feeling guilty it. A friend told me that hospice care now provides in-home services for disabled not under threat of death within 6 mos. which used to be when Medicare would pick up the cost of hospice care. I think such service would be a great boon to her. We've had several reported murder-suicides here since I moved to Utah resulting from people trapped in eldercare/disabled care situations who couldn't cope and who saw no way out of their dilemma. We just had another last week - a disabled elderly woman trying to take care of her more disabled elderly husband. She shot him, then killed herself. Last year, it was a daughter trying to cope with two elderly parents. She didn't kill herself and is now facing a double homicide charge, all brought on by the fact that people in families can't deal effectively with the decisions that must be made, regardless of the wishes of the elders concerned. It's just heart-breaking to read these stories.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Wed Dec 30, 2009 10:43 pm

Corlyss_D wrote:
Werner wrote:......................and poor Leslie, and Breezy.......
Incredibly strong though the mom is, she's in serious need of respite care without feeling guilty it. A friend told me that hospice care now provides in-home services for disabled not under threat of death within 6 mos. which used to be when Medicare would pick up the cost of hospice care. I think such service would be a great boon to her. We've had several reported murder-suicides here since I moved to Utah resulting from people trapped in eldercare/disabled care situations who couldn't cope and who saw no way out of their dilemma. We just had another last week - a disabled elderly woman trying to take care of her more disabled elderly husband. She shot him, then killed herself. Last year, it was a daughter trying to cope with two elderly parents. She didn't kill herself and is now facing a double homicide charge, all brought on by the fact that people in families can't deal effectively with the decisions that must be made, regardless of the wishes of the elders concerned. It's just heart-breaking to read these stories.
I have not posted quite a few entries lately as I prefer to keep some stuff under wraps, just like my thread about Starr she lays her soul out for all to see, her father has just been diagnosed with terminal Cancer, he has to make the decision to treat and fight it, or to accept the situation, it has not helped that she had to relocate to Florida because PA is too cold for Kevin, and you should see some of the comments on her Blog, most are very supportive but there are times where the Pub seems friendly compared to the flack she takes for some of her decisions regarding Kevin, Kevin's father's family have posted some really cruel comments there, I desperately want to visit them but circumstances have continually made me unavailable or they have been at the Hospital in Texas when I was able to go visit them, I don't post in her comments page but send private e-mails to her instead...and Col. Bob who first put me in touch with Kevin is off to Afghanistan, he has a very serious job to do and will be away from the US and his wife for nearly two years when all is said and done...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Thu Dec 31, 2009 1:51 pm

The Roller Coaster Ride Continues...
WEDNESDAY, DECEMBER 30, 2009
Day 580 - Dec 30, 2009

Kevin allowed Parshall to take him to therapy today - YAY! He had two therapies back to back so they were gone about 2 hours or so. Amazing!!! Parshall said it went really well and he was in a good mood when he got home so this may be a new pattern. Not every day, mind you, but it's a start.

And in even bigger news (can you imagine?!) - Kevin has been starting to say sentences. Today he started saying "shut the door" and "open the door". These are major things because it is VERY difficult for him to string words together. Now if we could just get him to understand the difference between open and shut it would make my job easier a couple of times a night. I don't know why, but he just can't comprehend the differences between the words open and shut and the words hot and cold.

So anyway, it wouldn't surprise me if he can talk somewhat well by this time next year. I sure hope so! This is the part that is most frustrating and devastating. Just not being able to be heard when you need to say something has to be so rough. And not being able to understand when someone is trying to tell you something is just as bad!

So that's about it for today. We did run to Lowes again because the handyman is going to install lights in the spare bedrooms as there are none and I also picked up some of the cat doors just so I can move the kitty litter to the garage. I have opted not to put one in Kevin's door because he has been leaving it open a crack and I prefer that than it being shut all the time.

Before I sign off - Long-Time RN - Kevin just decided to keep the cat named Princess. I don't think he has the cognitive ability to think up a new name. He really calls it Meow anyway, lol.

And I THINK he understands the reasoning behind the dieting, but he just doesn't care. He wants food and that's all there is to it, lol!
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Fri Jan 01, 2010 2:28 pm

FRIDAY, JANUARY 1, 2010
Day 581 - Dec 31, 2009

Happy New Year! I trust everyone had a great (and safe) night!

Today we spent quite a few hours at the VA hospital trying to figure out what is causing the pain. Kevin had to get an IV and have a contrast CT scan and it showed he has a small amount of fluid buildup, but we don't think it's causing the pain. I did ask and the fluid is on top of the plate, which is a good thing (I think).

We also had Infectious Disease take a look at the spot on his head and the doctor has no idea what it is. In the last few days it has formed a crust on top of it, so I am considering seeing a dermatologist. I need to talk to Mary about whether that's the route to take or see a burn doctor or what.

In the interim, I have made appts with a new neurosurgeon, but it's not until Feb 10 and I have also made an appt with a neuropsychologist on Jan 29 to help with the depression and also hopefully with cognitive rehab. I look forward to seeing what these two new docs can do for us.

And after all of this, Kevin and I went for a bike ride tonight. It was a beautiful day here today and I am determined to get him exercising to help him tone up and lose some weight. And let's face it - it won't hurt me either, lol.

And now I need to get my macaroni salad made. I want to cook out tomorrow night and mac salad tastes so much better the next day...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Mon Jan 04, 2010 10:27 am

SUNDAY, JANUARY 3, 2010
Day 584 - Jan 3, 2009

We had a pretty good day today. Kevin and I had to run to Lowe's again and get the fencing for the other side of the yard. I had not intended to fence in the side on the road, but after seeing what a difference it makes I knew it would benefit us.

After that we went and purchased a recliner so that I can get him out of his bed. He lays in bed probably 3/4 of the day and I want him to understand that that just isn't the way it is supposed to be. I sure hope this helps. He picked out the one he liked so it should have some effect on his wanting to make the change from bed to chair.

After that we went to my parents' house and visited with them for a while. It was a nice visit - Kevin was in a good mood the whole time, but we couldn't get him to play any games, which was a bummer.

And I had a chance to read the article in the PPG today and it is wonderful! You can all read it here:

Pittsburgh Post Gazette

That Mike is just a fantastic writer. Just as much as Rebecca is a fabulous photographer. What a good team, huh?

http://www.post-gazette.com/pg/10003/1025432-455.stm
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Wed Jan 06, 2010 10:16 am

TUESDAY, JANUARY 5, 2010
Day 586 - Jan 5, 2010

We both thought the movie was really cute. Kevin laughed quite a few times and truthfully, so did I. A worth-see if you like those kind of movies.

I really haven't been feeling well today. Neither Kevin nor Parshall woke me up until almost 2:30 this afternoon and I still didn't want to get out of bed. I also took a nap after we came home from the movie and am actually ready to get to bed now.

On that note, that's what I think I am going to do. Kevin hasn't called my name in about an hour so I might just be able to sleep.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Thu Jan 07, 2010 9:50 am

THURSDAY, JANUARY 7, 2010
Day 587 - Jan 6, 2010

I still feel really crappy. I didn't even get dressed today. I had Parshall take Kevin to therapy and although he was a little upset about it, he went. Such a far cry from a few months ago when he would NEVER do something he didn't want to do.

Other than that - nothing. I haven't moved from my spot on the couch and Kevin has pretty much just lay in his room all night. I ordered him a pizza for dinner - thank goodness they deliver around here - so at least he had something to eat. I feel kinda bad that I don't have the energy to get up and play some games with him or something, but I just don't.

And I think I am just going to end here and go back to bed. Hopefully my chest doesn't hurt as bad tomorrow because we have an appt at the VA to have Kevin's arm sized for the robotic arm brace that will do electronic stimulation and range of motion. It's our only shot at getting that arm to work. I just need to feel well enough to get us there. It is always so time consuming going there and it tires me out just thinking about it...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Fri Jan 08, 2010 10:42 am

FRIDAY, JANUARY 8, 2010
Day 588 - Jan 7, 2010

I feel much better today. Still not up to par completely, but way better than yesterday.

We did take Kevin to the VA today, but it didn't go over too well. He was in a lot of pain while trying the brace on and they want him to go back to OT before attempting this again. I have to give this some thought because it means we go back up to 4 days a week of therapy. I am really just not sure what to do because the occupational therapist that we were going to told us that the therapy really hadn't been making any difference. Yet when they turned the e-stem on, I watched his hand begin to open.

I just really don't know which way to go. I think I want to talk to the therapists at BAMC before making any decision. They were the ones that worked with him last and they may be more in-tune with the reality of the situation.

And Tracy is coming on Saturday - what a surprise! It's good timing because Kevin will be busy with Ronnie and Tracy and I can get the rest of this house in order.

Poor Tracy and Ronnie. Wait til they see that it is freezing here! It's definitely not vacation weather. We are wearing sweatshirts and winter coats! Yuk!

And now I am going to leave y'all with some photos of Kevin today. The first three are him at physical therapy. The last one is him sitting on the floor checking out his MySpace page. (oh - and if anyone local to Pittsburgh recognizes the therapist - that's where she's from!)
Because of the fact that i'm on a Mac posting pictures takes up precious space on CMG's Server, click the link to see Kevin exercising...

http://www.lesliekamm.blogspot.com/
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Sat Jan 09, 2010 2:39 pm

SATURDAY, JANUARY 9, 2010
Day 589 - Jan 8, 2010

We went to the VA again today to discuss the pain issues and when to begin detoxing Kevin. I guess I am a little confused because the last time we were there we were told that the docs would use Suboxone to detox Kevin as it takes away all of the symptoms of withdrawal, but then today we were told that only extreme addicts that are to the point of robbing people to get their drugs can get the Suboxone from the VA. Say what? I think that is just nuts! Once again, I think this system is totally messed up. You've got these guys and girls being wounded in combat, needing narcotics to handle the pain that their injuries cause and they can't get help with drug rehab? Yet some junkie that is wielding a gun to get his fix can? I honestly just don't understand this!

So I guess I need to figure out what to do on this one. I just wish something could be easy. It seems to be a foreign concept though, huh?

And although I am feeling better, I still don't feel super great. I took a four hour nap (and so did Kevin) after coming home from the VA today and you would think that that would keep me up all night, but I am still so tired. My mom tells me that it's because I'm run down and I suppose she's right.

And speaking of my mom, she now needs to go to the doctor because they found a tumor. I think my family is falling apart. I already told her that she's not allowed to have cancer because we already have enough on our plates. She goes to the docs on Monday so please keep her in your thoughts as well.

And since Kevin is already sleeping again too, I am going to bed.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Tue Jan 12, 2010 11:28 am

TUESDAY, JANUARY 12, 2010
Day 592 - Jan 11, 2009

Well, Ronnie got here this morning. Unfortunately Kevin has not been in a good mood at all today. I think he might have been tired because he was up all night so excited that Ronnie was coming. I don't know. I just know that he spent the whole afternoon and night in his room by himself. He didn't come out, not even one time.

Very disappointing. And I feel bad for Ronnie. Hopefully things are better tomorrow.

So obviously we didn't do anything today. I am going to sign off though because Tracy and I are each sitting here trying to figure out our accounting software. I got Quicken on Ebay so that I can keep Kevin's budget in order, she got Peachtree for work.

Before I go, an anonymous poster asked that I keep her 1 year old grandson in my thoughts because the baby is in Children's Hospital in Pittsburgh for MRSA. Can I ask that everyone keep the little one in their thoughts?
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Thu Jan 14, 2010 10:09 am

THURSDAY, JANUARY 14, 2010
Day 594 - Jan 13, 2010

Well, I got some very upsetting news today. Remember how we went for some tests and found there is some fluid buildup on Kevin's head? Well, one of the docs from the VA hospital called tonight and told me that we need to get to Texas pretty quickly. I think he said that the fluid is inside the plate, not outside like we were originally told. Frankly, I was in shock and didn't really hear much after he said that we needed to go back to TX.

So I guess they all had a conference today - the docs here and the docs there - and that's what they decided.

The problem is that it is not just that easy to leave right now. My WHOLE family is coming in a week or so for my dad's surgery and with Mom possibly having cancer too, it's just not a good time.

But what choice do I have?

I did tell the doc everything tonight and he agreed to call the neurosurgeon we have an appt with on Feb 10. I am hoping that a call from another doc will spur him to get us in early. It's really our only alternative.

And on that note, I am going to quit early tonight. Tracy is leaving early in the morning and we are trying to get everything packed and ready to go.
The Roller Coaster never stops, what an incredibly stressful life Leslie has, boy, do we ever owe our Troops a huge debt of gratitude...
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Re: Updates on Kevin, CMG's Hero...

Post by Werner » Thu Jan 14, 2010 12:33 pm

And that certainly includes their families.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Fri Jan 15, 2010 10:38 am

FRIDAY, JANUARY 15, 2010
Day 595 - Jan 14, 2010

Well, we didn't really learn much today. The doc here called the new neurosurgeon we were supposed to see in Feb, but he never returned the call. In the interim, Dr T from Texas, called and told us that if we can't get seen immediately by a neurosurgeon here in FL we need to be on a plane ASAP.

So Sue, one of the wonderful people at the VA, got on the horn and faxed all of Kevin's records to a different doctor here at Tampa General and we are waiting to see if he will take Kevin on.

It would be different if his issues were simple, but goodness knows - they most definitely are not.

So I feel like I am being torn in two. I know you all think I am a strong person, but I am sitting here with tears running down my face just wondering what the heck I'm supposed to do. My parents told me just to go. Just take Kevin and get this fixed. And of course I want to. BUT like I said last night - it's just not that easy.

Just the thought of losing my dad sends me into a tailspin and thinking that I might not even be here is ripping me apart.

I know, that in reality, I will have no choice but to take care of my baby. No matter what, I know this. But damnit! I really just want this to end. I want Kevin well. I want my dad well. And I want my mom well. That's really all I want in the world.

Can somebody please PLEASE make this happen?!!!
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Sat Jan 16, 2010 2:44 pm

SATURDAY, JANUARY 16, 2010
Day 596 - Jan 15, 2010

I am feeling a little bit better than last night. It's just going to all work out the way it should, I guess.

So we couldn't get a neurosurgeon to see him today. To be honest, we can't get him in before Wednesday (and even that's not a sure thing). Because we wouldn't even be able to get a flight from the VA before Monday, we are just going to stay here and see what we can find out. If they can't get us in Wed or Thurs, then I will make alternate arrangements.

I will say that Kevin's face is getting a little bit swollen, but he has no other signs of ICP (intercranial pressure). My mom wondered if he might have an abscessed tooth and I have to admit it's a possibility. He hasn't seen a dentist since being wounded and they say IED blasts have a definite effect on teeth. I'm not sure though if that would have anything to do with the fluid buildup though.

I guess we'll see how the weekend goes. If something really bad happens, I do have the option of taking him to the emergency room. It's just that right now the two doctors at Tampa General that aren't on vacation are the two doctors from the VA. Let's just all keep our fingers crossed as I will probably drive him to Sarasota before I will let either of those two touch Kevin.

So to some great stuff - Kevin and Ronnie have been wandering around the world. Ok, that may be an exaggeration, but they have been heading out every day and doing 'things'. Yesterday they went to dinner together at Olive Garden and today they drove over to St Pete to The Pier to see my niece, Chrissy. They also went to dinner tonight too and I can't tell you how awesome it was to see the boys go out and do fun things. I so wish Ronnie lived here! Kevin has been having such a blast and it's going to be so sad to take Ronnie back to the airport tomorrow evening.

But, we have no choice. Tomorrow he has to go home...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Tue Jan 19, 2010 10:43 am

TUESDAY, JANUARY 19, 2010
Day 599 - Jan 18, 2010

I was very disappointed tonight. I think I told y'all a while ago that Maxim had found us a young guy that was going to come and play video games with Kevin and take him to do 'guy' things. Things that a normal 21 year old would do.

Well geez. Tonight was going to be the first night that this young man was to come and I spent the whole weekend building Kevin up for this only to find that the guy that showed up tonight was a 47 year old man that didn't even know what an XBox was or even what UNO was. SAY WHAT?!!

I mean seriously?! I even talked to the guy at Maxim today and they told me he was a little older than Kevin and that I should keep an open mind. An open mind? HA! He's older than me! Kevin was so bummed out and I can only hope that I was able to hide my feelings. What a waste of time. What a waste of priming Kevin to be ready for this. Now Kevin won't be as open to it the next time. And I'm just curious how long this is going to take. It took them months to find this 'young' guy!

This was just so disappointing. And truthfully, I don't really like being put into a position where I have to tell someone to leave and not come back.

Well, it looks like I need to make a phone call tomorrow and let Maxim know that I want a skater punk that plays Halo! I really don't know how I can be any more clear than I already have been. I guess I'll have to talk S L O W E R. (Yep - a little bit of sarcasm)
And I can hear Kevin in there snoring so I am going to bed too.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Thu Jan 21, 2010 11:23 am

THURSDAY, JANUARY 21, 2010
Day 601 - Jan 20, 2010

Today was not a good day. Kevin was up ALL NIGHT sicker than a dog. He vomited all night and has been sick all day today as well. At first, I was worried about it being his head, but then I started feeling nauseous and I felt almost as bad most of the day. It still might be his head, but it could just be a bug too. Hopefully he feels better tomorrow. Hopefully we both feel better tomorrow.

As for his head, we still haven't heard from a neurosurgeon here. I thought we would today, but no go. I think I might just get on the phone myself tomorrow and see if I can find someone. I'm just scared of getting some quack that doesn't know how to handle his issues.

And to Jo and Jessica - I really like the idea of the electric toothbrush. I will look around Ebay after I finish posting this. And Jo - I just did a layout the other night of Levi when we went to Busch Gardens (you can see it at my scrap blog link in the right column). Tell my buddy I love him! And I love you too!

And I think I will head to bed myself. I 'slept' (and that term is used VERY loosely) in Kevin's room last night as he was so sick so I am pretty tired (but what else is new, eh?)
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Fri Jan 22, 2010 10:56 am

THURSDAY, JANUARY 21, 2010
Day 602 - Jan 21, 2010

Kevin was still sick this morning and I was starting to second guess myself. I kept thinking that maybe it was his head and started trying to find someone to take him immediately. Sue, a great person at the VA, worked hard and finally found a neurosurgeon that would take Kevin - but not until next Wed.

This made me really sit and think about things today. Even though I still feel really crappy, I had to run to the VA pharmacy to pick up Kevin's meds and I left him home with Parshall because he was still sick. This gave me hours to think and discuss things with Mary (wonderful FRC).

So here's what I came up with:

We are not going to Texas. And we are not going to that doc on Wed. The situation is that if we go to that surgeon on Wed, we can't go to Dr H. on Feb 10. It's already been how long without any action so what's a little bit longer? I also researched Dr H. fully months ago and feel strongly that he is our best choice. The hospital he is associated with has a new neuro-science ward that focuses on brain tumors and injuries. He also works alone - no physician's assistants and no residents. He is hands on and knows his patients inside and out. This is exactly what we need. I hated new residents rolling in every few months and us having to teach them Kevin's issues all over again. I want to be able to call the doc and say 'hey - this is going on' and him know that that's not the norm and not have to run all these tests to make sure I'm telling the truth.

So I am going to just watch Kevin (just as I have been) until Feb 10. I had already talked to a previous doc and asked if I should put Kevin back on the MRSA antibiotic just in case there is an infection so he is already being treated proactively.

I know that if I do see any signs of potential problems I will call an ambulance and take him to the emergency room of Dr H's hospital (hoping he will be on call if we have to).

Which brings me to why I feel confident doing this. Kevin isn't showing any signs of infection. I check his temp often and there is never even a low grade fever. If he had problems with the fluid buildup, he would be lethargic (nearly non-responsive), his leg would be shaking uncontrollably and he would be vomiting constantly (which btw stopped this afternoon and he is back to eating and drinking normally so I assume it was a bug - now if I could just get over it). I can also say with extreme sureness that he most definitely would not be talking better than ever. His cognitive state would have been sliding backward - not forging ahead.

I do know that I might be wrong. Heck the whole thing is a crap shoot as really - no one knows how to really fix things with Kevin because what he has come through is a miracle. So I am going to roll the dice and hopefully win the game. If I'm wrong, the guilt will eat me alive so please keep your fingers crossed that I'm right.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Sat Jan 23, 2010 1:45 pm

SATURDAY, JANUARY 23, 2010
Day 603 - Jan 22, 2010

Kevin, Parshall and I went to the Manatee Viewing Center today. It was a beautiful 75 degrees and sunny here so I figured today would be a good day. Unfortunately, Kevin just hated it. I guess it was just too boring for him, lol.

I suppose it is kinda boring, but something else that needs worked on is having Kevin realize that it really isn't always about him. This is not an easy thing to change because when he's miserable he makes sure everyone else is. But, I'm still going to keep working on it.

And thankfully, we both feel better today. I guess it was just a little bug. We feel better just in time too as my sister and her family will be here tomorrow. They will be staying with us for about 10 days. Breezy will also be coming next week and my brother came yesterday. If my nephew can get off work to be able to come down, the whole family will be here. I sure hope he makes it.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Tue Jan 26, 2010 1:39 am

Day ???

I have taken Kevin to the hospital as he started vomiting again tonight. We are still there so i will update as soon as I can.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Tue Jan 26, 2010 1:41 am

MONDAY, JANUARY 25, 2010
Day 606 - Jan 25, 2010

I had hoped to get on here earlier today and let y'all know what the docs said, but Kevin has been sick all day long and I was on the phone all day long trying to get things figured out.

So the docs at the emergency room last night told us that Kevin doesn't have any signs of an infection. His blood and urine were completely clear of any possible problems. He had a CT scan as well and they came back and told us that it was completely fine. I'm not sure what that means as I know there is fluid building on top of his plate, which is why I spent the day on the phone.

We didn't get home this morning until close to 4am and neither one of us could sleep until almost 9am. I had a ton of phone calls to make so I got up within a few hours and got started. After MANY phone calls and after watching Kevin still throw up all day long, I decided just to take him to the VA. I was concerned about the hospital we went to last night not having a CT to compare to, kwim?

So anyway, I called the head doc at the VA Polytrauma (whom I really like) and he felt that Kevin could try to make it through the night tonight. Like me, he doesn't see any 'real' signs of ICP except the vomiting. If there was more buildup of fluid, he would probably be showing some of the other signs.

So after I made Kevin some soup, and he was able to keep it down tonight, I was just sitting here thinking about his symptoms. All along I felt it was a bug, but it could also be his stomach just rejecting something. Kind of like it's agitated. He hasn't really been eating anything, which made me think of his meds.

Ummm...hello...?!! Years ago I was on an anti-inflammatory and after 2-3 months it was eating my stomach alive. Kevin has been on that same med for about 3 months now. I remember thinking when they started it that I was going to have to watch for signs of it bothering him, but I completely forgot about it until tonight.

What I realized was that for the few days Kevin was sick earlier last week, I was only giving him the emergent meds so that he had a better chance of keeping them down. I left this drug out. Once he felt better, I gave it to him again and he started vomiting the next morning. I didn't give it to him tonight and he feels just fine now. It could all be coincidence, but then again - this could be part of what it making him ill.

I am anxious to talk to the docs about this tomorrow.

So right now he is in his room watching Family Guy and he feels fine. I am going to sleep in the living room tonight though just in case and we'll see how he does through the night.

And on to other news...my mom went to two docs today. I don't think I mentioned it, but there was talk of her having Blood Cancer. She does not have that - YAY!! She still has to have the cyst on her kidney checked out, but we are confident that it will be fine.

And last, I had the chance to do an interview last week with a reporter from USA Today and they are running a story on Wed about Caregivers of Veterans. She is a super nice person and I look forward to her story. I wanted to give a heads up for those that may want to read it.

And now I have to 'prep' for dinner tomorrow. It's the last meal my dad will be able to eat before his surgery on Thursday so we are having the big turkey dinner - just like Thanksgiving.

Here's hoping that Kevin is well enough that we get to eat it! (because really - if he's not - I won't even be here to cook it!)
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Fri Feb 05, 2010 9:54 am

MONDAY, FEBRUARY 1, 2010
Day 613 - Feb 1, 2010

I had planned to take Kevin over to the hospital today, but it turns out my Dad now has MRSA. I plan to keep Kevin as far away as possible, although since we were there yesterday and didn't know about it - any damage could have already been done. I really just wish things would work out for my dad, but things aren't going as well as the doctors would've liked. I am keeping optimistic though. Always.

So instead, I went with Kevin to therapy and spent the time making phone calls. I also ran and picked up the forms for a handicap parking pass. Can you believe we aren't even able to park in a handicap spot (legally anyway)? There is just never time to do paperwork and I need to make it a priority.

Other than that, we just spent the rest of the day at home. We started to watch a movie tonight, but Kevin just couldn't get into it so he went to his room. At least he tried to stay in the living room - it's a start anyway.

And I think I am going to sign off and watch some mindless tv.
THURSDAY, FEBRUARY 4, 2010
Day 615 - Feb 3, 2010

Kevin and I spent the whole afternoon at the VA hospital having tests done. I took a look at the CT scans with the doctor and she actually explained to me how to 'read' them. Kevin definitely has some fluid buildup both on top and beneath the plate. It doesn't appear to have changed any since Dec though so I am not overly worried.

I did ask the doc to send us to a Dermatologist though. Maybe they will know what that spot is on Kevin's head? It's worth a shot so we shall see.

We also visited my dad who is back to his normal self. He is able to eat solid food now and they told him he may actually get to go home tomorrow. YAY! Amazing, right? Two days ago we thought he wouldn't ever get out of ICU and now he may be going home. I guess we can see where Kevin gets it, huh?
FRIDAY, FEBRUARY 5, 2010
Day 616 - Feb 4, 2010

Would you believe that Kevin slept a full 8 hours straight last night/this morning? I actually left at 1pm to run to the DMV and he was still sleeping. Unbelievable! And it made such a difference to how he felt all day. You could just see how rested he was. I sure wish he would sleep like this every night.

So we didn't really do much today. I came home from my errands and Kevin and I went for groceries and it was kinda fun because we were there over 2 hours. We went up and down every single aisle and looked at everything. We just never do this. I hate shopping so I always just go grab what I need and get the heck out of there. Kevin loves to shop though. Mostly he just looks at everything and I think it's good for him. More often than not he remembers things from his past so it's almost like therapy.

And really that's all we did. We didn't have to go see my dad today because he came home from the hospital. I wanted to give him quiet time at home on his first day, but we will probably go see him tomorrow. Hopefully anyway...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Sun Feb 07, 2010 1:10 pm

SUNDAY, FEBRUARY 7, 2010
Day 618 - Feb 6, 2010

I took Kevin to the emergency room again today. The area that the drain came out of (in his head) back in November had a huge blister over it when we got up this morning. For days now, I had been watching it build up and today it finally started 'leaking'. So I took him in to have a culture done. I know it can take up to 3 days for certain bacterias to show up, so we should know something by Tuesday.

Oddly enough we were at the emergency room the same time my dad was. His stitches came undone and his stomach was gaping open. They restitched him and sent him home.

So after we all left the hospital, we went to my Mom and Dad's and had dinner. That's about it for today.

I did want to answer Kathy in IA's question. She asked if Kevin remembered everything by looking at the boxes (in the store) and the answer is yes. Kevin remembers everything by visual stimulation. EVERYTHING. He only struggles when you try to jog his memory through words. Even people that are close to him, but that we don't see all the time, he will forget who they are. As soon as he sees them though, he remembers everything about them.

Sometimes though, he will remember someone by an event. For example Janet who lives here in Tampa - but we have only seen while we are in Texas. When I mention Janet, I have to say "remember the woman with the long blond hair that we went to Chick-Fil-A with that day?". As soon as I say that - he knows exactly who she is. (BTW Janet - I am so glad Matt's surgery went well this time. I will call you soon!)

I can't just say 'remember Melissa from work' though. We did that tonight because a woman Kevin worked with at Riverside sent me a message on Facebook, but it worked out because I just showed him her picture. As soon as he saw her face he got all excited.

Kevin, for the most part, remembers almost everything. It's just names and things like that. Even the names of objects. He doesn't know the name of a plate or a fridge or the washer. But he knows what each of those things are and what they do. It's so strange, huh?

And to sign off - to all my Western PA friends - I feel for you guys! 24 inches of snow!! It just proved to me that I did the right thing though. Kevin needed to get to a hospital today and I could have never gotten him there if we were still in PA. This may be a very lonely existence, living in Florida - but at least I can take care of Kev without worrying about snow and ice.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Thu Feb 11, 2010 10:32 am

WEDNESDAY, FEBRUARY 10, 2010
Day 622 - Feb 10, 2010

I am ecstatic because we went to see the new neurosurgeon today and I REALLY liked him. He was extremely kind to Kevin and he also took the time to explain so much to both Kevin and I. He even went over the CT scans with both of us and he showed Kevin where his brain was gone. It was the first time Kevin physically saw that instead of a circle showing the whole brain, the left side is cut off about an inch or so in from where it would normally be. He also explained all the 'dead' spots. I think most of it went over Kevin's head, but it was still nice to have him explain it all to us.

So he feels good about things with Kevin, but he did say that Kevin needs to not touch the two spots on his head where the skin is bad. He worries about the skin breaking open and meningitis setting in. So for now, I am trying my hardest to keep Kevin's fingers off of his head. Not an easy feat, I tell ya!

It was also interesting to see the doctor ask Kevin to do certain things and how Kevin responded. Like when he asked for Kevin to stick his tongue out, Kevin held his arm up. When he asked for a thumbs up, Kev opened his mouth. Kev just really struggles with those kinds of things, but we always have to focus on the good, right?

So we go back in a month for another CT scan and then directly to the surgeon's. We will have a better understanding of things at that point, but I was told that Kevin does not have an infection. The culture came back clear! YAY!!

And I am going to sign off now. My brother is staying here for a few days and although both he and Kevin were teasing me because I scrapbook - they are both sitting here looking through each one of them. It's a nice family moment and I want to enjoy it.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Fri Feb 12, 2010 10:37 am

THURSDAY, FEBRUARY 11, 2010
Day 623 - Feb 11, 2010

Remember how things were all rosy yesterday? Remember how good I felt about the new doctor? Well scratch that!

Kevin started draining CSF out of the hole in his head at about 3am (he didn't pick at it, but it started when he lay his head on his pillow). I talked to the answering service last night and to cut the story way short - the surgeon called early this afternoon and told us that he just didn't feel he can be Kevin's doctor.

He explained that due to the opening in Kevin's head, the chances are good that he has already been infected with either MRSA or Meningitis and that he feels we need to go back to the VA or BAMC. He just doesn't feel he is a good fit if Kevin needs to be hospitalized for 6-12 months as he will if it is infected and the plate needs to come out.

So I have literally been on the phone for the last 8.5 hours and we are now booked on a private flight tomorrow afternoon for Texas. This organization - Veteran's Airlift has decided to help us get there and I can't tell you how much I appreciate this.

And now I have to get back to laundry and packing and bill paying and cleaning and gosh knows what else before leaving tomorrow.

Wish us luck!
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Sat Feb 13, 2010 1:29 pm

SATURDAY, FEBRUARY 13, 2010
Day 624 - Feb 12, 2010

I am extremely exhausted tonight so I am just going to tell you that we made it safe and sound. Kevin was ecstatic because we got to ride in a corporate jet all by ourselves. He was so excited.

We also went to the hospital for a work-up once we got here and so far everything looks good. They sent us home until Tuesday, unless Kevin starts to drain more CSF. In that case, we rush back to the ER.

And now I am signing off and hopefully getting settled in to go to bed. I am just so tired...
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Sun Feb 14, 2010 1:44 pm

SUNDAY, FEBRUARY 14, 2010
Day 625 - Feb 13, 2010

I don't think I explained myself very well when I said the docs sent us home until Tuesday; what I meant was that we are at Breezy's and that we weren't kept at the hospital. They had planned to admit Kevin when we arrived, but they didn't feel it was necessary once they saw how well he was doing.

So we are still in Texas and will be until at least next week. Maybe much longer, who knows.

And Kevin and I didn't really do anything today. We both slept until really late in the day, probably because we were so tired after yesterday.

But here is the picture I took of Kev in the plane. You can just see how excited he was, huh?

He sure loved that flight, lol.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Mon Feb 15, 2010 12:42 pm

SUNDAY, FEBRUARY 14, 2010
Day 626 - Feb 14, 2010

Happy Valentine's Day everyone! We did absolutely nothing today. Kevin and I never left the house, but Breezy and her boyfriend ran to the store a couple of times. I cooked a big dinner for all of us and then we all just sat and watched tv.

Kevin is doing well, but a new huge blister is forming on the same spot on the back of his head as the other day. I am hoping it makes it until Tuesday so that the doctor can see it, but I doubt it does. It's getting quite large and is very inflamed and painful for him.

I have to say I wish I would've known that we weren't 'really' going to be seen until Tuesday because I wouldn't have rushed around to get here in one day. Unfortunately, a certain doctor we saw last week was quite the alarmist and had all of us freaking out, hence the rush.

But it's ok. I do feel better that he was seen and I was told it was ok to wait until Tuesday before any in-depth look at the situation. I trust these guys here more than I have trusted any neurosurgeon since this all began so I am ok with the wait now that I know it's ok to wait, kwim?
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Wed Feb 17, 2010 11:02 am

MONDAY, FEBRUARY 15, 2010
Day 627 - Feb 15, 2010

I guess I jinxed us last night as Kevin is now admitted to the hospital pending probable surgery tomorrow or the next day. When the bubble popped last night it was actually yellow CSF as opposed to clear. This typically means infection has set in so they are planning to remove the plate and everything else from his head. Nothing is definite yet, but everyone is leaning toward this option.

So anyway, there is no Internet in his room and I think it's safe to say that my posts will be sporadic, but I will keep y'all updated as I can.

Keep us in your thoughts please!
TUESDAY, FEBRUARY 16, 2010
Surgical Update

This is just a quick update to let you all know that Kevin did have the plate removed today and when the doctor lifted it out there was the equivalent of a bowl full of puss underneath it. Who knows how long it's been infected, but I would guess a long time.

So we are in ICU and I still don't have Internet so I will fill everybody completely in when we get to a room that I can log in and really type from.
This is obviously really bad news, if it is infected it could mean months before they can re-attach the plate, the bigger worry though is long term, he could have this happen all thru his life, one of the biggest concerns when they finally attached he plate last year was the issue of leaking puss, and the fact that the plate has to be removed in order to find out if it is leaking, my heart gores out to Kevin and his mom, lets all think positive and hope for a report of no infection, this is so incredibly sad...
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Re: Updates on Kevin, CMG's Hero...

Post by karlhenning » Wed Feb 17, 2010 11:53 am

Sending positive vibes.

Best,
~k.
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Re: Updates on Kevin, CMG's Hero...

Post by Chalkperson » Thu Feb 18, 2010 2:10 am

WEDNESDAY, FEBRUARY 17, 2010
Day 629 - Feb 17, 2010

We are in a normal room now - out of ICU. Kevin has been doing very well, although he is in a lot of pain. No surprise there, I guess.

So it turns out that he wasn't leaking CSF as I had been told, but he was draining some of the infection from his head. We still don't know what bacteria has infected him as that can take up to 3 days. I sure hope it's just some minor bug and nothing hard to get rid of.

Unfortunately, that spot on the side of his forehead that I was worried about came wide open while he was in surgery. The neurosurgeon called in a plastic surgeon, but they decided not to worry about Kevin's appearance and just find a way to get it closed. This meant that they had to pull the skin taught from wherever they could pull it to get it to cover the large area. This means that he is unable to shut his left eye now and his skin is really tight.

My heart is just breaking for him.

One good thing (?) is that Kevin was nauseous late this afternoon and they gave him medication for it and it has knocked him on his butt. He has been sleeping for 6 hours already and I hope it continues through the night. We did have a couple bouts where he woke up completely out of it and we had to call the doc in, but she said it is a normal side effect to this medication. It just scared me because it was a blast from the horrible past.

I did take advantage of his sleep though and took a nice nap myself.

And I am going to quickly answer just a few questions and then read for a little while. First, to everyone - thanks for keeping my dad in your thoughts. He is doing somewhat ok, but it's going to be a rough road.

We also found out yesterday that they have indeed found a mass inside of my mother. She is going tomorrow for a biopsy.

And my sister and her husband were in a car accident the night before last. From what I hear, they are both ok.

Forget about 'when it rains it pours' - we are in the middle of a hurricane!

Jessica - you asked if Kevin has been on antibiotics for a while and the answer is yes - for 5 months now. We think it is partly why things weren't showing up on any blood work and tests that were done. He also had no 'real' signs of infection.

Hallie - you mentioned a functional MRI and if I remember correctly - you can't do an MRI on a patient with a shunt. I believe it throws the shunt out of whack, but that may not be the right reason.

There are a few more questions/comments, but most of them pertain to finding someone to spend time with Kevin. It's kind of a moot point right now, but I will say that because Kevin isn't as healthy as most of us, for now I was more looking for someone paid and insured for the trial run of this endeavor. Once I see that it works for Kevin to have someone come in, then I can go out into the community and have some kids or military personnel come in sometimes. As I said though - for now it's nothing we need to worry about. I think we are going to be here a good, long while.

And now I am going to leave you with a picture of Kevin from yesterday right after his surgery. He was much happier then because his pain was more managed.
Last edited by Chalkperson on Mon Mar 01, 2010 11:23 pm, edited 1 time in total.
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