Day 519 - Oct 30, 2009

Well, Moe went home today. What a bummer. I think one of the hardest things about this whole ordeal is the loneliness that all three of us feel. It's not easy having no friends near us, having no one to call and grab a bite with or even just to sit and watch a movie with.

I think it's hardest on Kevin as he can't even 'talk' enough to make any new friends, but we all feel it.

However, we all had a great week with Moe. It was just nice playing UNO and getting Kevin out the few times he would go.

We love you, MOE!!!

As for today, nothing much happened. I made a call to neurosurgery because Kevin has a spot on his head that is turning red, it's warm to the touch and it has a gray area in the middle of it and you can feel the divet(sp) like from before the surgery to fix that stuff. I was so scared this meant that the MRSA attacked his plate, but the PA told me that if it had the fluid coming out of his head would be cloudy with puss. So far it's just blood and a peachy colored fluid. It's not milky so so far, so good.

And that about sums it up for today.

Day 518 - Oct 29, 2009

I am not going to write much tonight because Moe is leaving early tomorrow morning and I want to spend the most time I can with her as it will be a while before we get to see her again.

We had a great week though and an excellent day. Today we went first to a Chinese Garden and then to the wax museum. I took over 300 pictures today and I think we all had such a good time - even Kevin. (and we know a garden isn't his cup of tea, but he loves to ham it up for the camera, lol) This place is utterly gorgeous and if anyone has the chance to visit - you should do so.

So here are some of the photos from today:










I am so excited to have all of these pictures to scrapbook. I so rarely get any of Breezy, but we made up for it today.

Ok, I am signing off for tonight. But before I do - I never thought about you guys adding to Kevin's new shotglass collection - I think he would be so excited to get some in the mail from places he's never been (or maybe will never go to). I'll bet he just smiles like a madman when he gets the mail once we get home. Thanks everyone for a great idea. I think it will make one young man very happy!

Day 517 - Oct 28, 2009

Kevin finally went and did something fun today! We have been asking him every day and we finally hit paydirt!

So today we went up the Tower of Americas. It was pretty cool and we had a really good time. It was even better because nobody else was up there with us. It had been kinda overcast so I imagine people didn't want to go on a gray day. We did though, and man - was it windy up there! We don't have one clear picture of any of us without our hair all over the place. Here's the proof:

This one is Moe and Kevin:


And obviously this is Kevin and I:


And I just had to share this one because Kev looks like the Joker from the Batman movies, lol:


You would not believe how windy it was up there!

And I guess Kevin is starting a collection of shot glasses. He bought one today and he bought one last week at The Hard Rock. And the last time we were here in Texas he got one at The Alamo, so it looks like I have a collector on my hands, lol. That's okay though - these things are relatively cheap and they are nice and small so they won't take up a whole bunch of space in the suitcase. It's just kinda a weird thing to collect as he doesn't even drink...

And that's about it for today. I am hoping to get him to the wax museum tomorrow as Moe has to leave on Friday morning (already?!! :-( ). They both want to go so maybe he will feel up to it!

Day 516 - Oct 27, 2009

So I guess we are going to keep the drain in another week or two and go from there. The doctor we saw today admitted that Kevin is (once again) setting them to shaking their heads in wonder. They just don't know what to do with him.

Today the doc told me that it could be we leave the drain in 6-8 weeks - they have heard of that happening before - and that leaves up to another 4 weeks.

We did stitch the drain tighter to his head so we shall see how much fluid really is coming out. It had decreased, but only once there was drainage on his pillow. We don't know how much leaked out of his head. Tomorrow morning will tell, I guess.

Our actual neurosurgeon is at a conference this week, so I guess we will have to get together next week and come up with an all-out plan. A decision must be made on what to do. We can't just keep twiddling our thumbs here.

On another note, I met with the pain management doctor yesterday. It was so not what I expected. I thought I was going to go in there and we were going to come up with a plan to manage Kevin's pain, but what I was told was that Kevin must be addicted to narcotics and needs to go through detox. After talking to the doctor for over an hour, I feel he may be right. BUT - I don't feel it's time to do anything about it. If we end up having to take the plate out of his head, he is going to need narcotics to get through the pain. We also have too many other things on our plate to add another right now. So I am putting this one on the back burner for a bit - hopefully no more than a few months. Maybe after the holidays...

I have to admit that I called my mom and dad after this appt and just broke down. I feel so bad that Kevin has to keep going through all of this crap. It's just so hard to have to keep going to him and throwing yet another issue on his shoulders. I fear the day when he says 'no more'. When he refuses treatment because he is just so tired of every step adding more problems. I know it exhausts me so I can't imagine what he feels.

But for now, I am just trying to keep his spirits up. I am going to continue spinning everything like it's all better than sliced bread. That's what we do, that's how we get through the day. I've said it many times before - fake it 'til you make it...

Day 515 - Oct 26, 2009

Kevin started draining fluid from around his tube the other day. I connected with the neurosurgeon today and we are going to go in tomorrow and have it stitched tighter.

I think I am just stalling. Truthfully, the fluid just isn't getting any less so it really looks like we are going to have to take it all out. And pretty quickly.

I am just so scared to do this. Nobody knows what will happen. And I just don't know what to do - stay here in Texas and have it done or try to find a neurosurgeon in Tampa and go home to do it.

I worry about going into a new hospital where we are unfamiliar with the treatment plans. (I WILL NOT do this at the VA hospital) But I don't really want to stay here with my dad having cancer. It would also be nice to have some help from my family and it would be really nice to sleep in our own beds as opposed to hotel living for months.

But I worry about not being close to the burn clinic. Why I don't know - it just
'feels' like I should worry about it.

There are just so many questions - can Kevin live at home without a skull? Or are we going to have to live in a hospital environment? Since the MRSA seems to be localized, will removing the skull send it all over his body? Or should we just leave the drain in longer, just in case it does work?

I guess I just need to do some more thinking. And get a few answers to some of these questions before making any sort of decision.

And on a side note, Moe and I went sightseeing yesterday. We had a really great day and Kevin and Breezy had a good one too. I am going to leave you with a photo of Moe and I in front of a waterfall at the Riverwalk. If anyone ever comes this way, the Riverwalk is a must-see as is Mission San Jose. Beautiful!

Day 514 - Oct 25, 2009

I am going to skip writing tonight because we are all watching a movie. Will catch y'all tomorrow night...

Day 513 - Oct 24, 2009

We didn't do much today. We had planned to go to the wax museum - I said we were gonna do something fun every day this week - but we just couldn't get Kevin going early enough. By the time he was ready to do something, it was 7:30 this evening and downtown was so packed that we couldn't navigate the sidewalks with his wheelchair.

I decided that we would wait until Monday to start doing some of the tourist traps because there are a couple of major events this weekend in San Antonio and there are so many people here that it's unbelievable. It will be calmer once everyone either goes home or goes back to work.

Moe and I are planning to go on a self propelled Mission tour tomorrow though. Who knows where we'll end up, but I am looking forward to a day out with my friend.

We did get some company this afternoon and that was really nice. My cousin, Elizabeth, and her boyfriend Jake, came to visit for a while. Jake is Army and is stationed at Ft Hood, a few hours north of here. They drove down to visit and to spend some time at the Riverwalk. I am going to leave you guys with a photo of the four of us tonight. Breezy had already left to see some friends so she is missing from the pic and unfortunately Moe is taking the photo so she's not in it either.

Day 512 - Oct 23, 2009

Moe made it today - finally! Her flight was delayed for 3 different reasons, but she did finally arrive. Her luggage didn't - but I'm sure it will make it here eventually.

Kevin is just so excited that Moe is here and he couldn't wait for her to get here. He was tapping his foot all afternoon. They have always been so close and it's good to see him interacting with her.

And in other news - Breezy passed her stone. Or should I say her speck of sand. It's amazing that something barely noticeable can wreak such havoc on your body.

And now I have to run and do a load of laundry. Then Moe and I are going to BS for a while.

Before I go though - an anonymous poster asked if my kids were twins and the answer is 'no'. They are 4 years and 4 days apart. Breezy is 25 and Kevin is 21.

Day 511 - Oct 22, 2009

We had an appointment at a TBI clinic today at BAMC and it went so well. It is really amazing how far Kevin has come in the last few months, but most especially the last month - since we got to Texas really.

The doctor talked to him for a full hour, asking him all sorts of questions, and he understood pretty much everything. I have noticed him following more and being able to 'answer' or respond accurately lately. This gives me such hope.

Mary (FRC) and I have also been discussing sending Kevin to a facility that will teach him to be more independent at home. I think we are getting close to him being able to go to something like this, but the time isn't right quite yet. He still has to pull back from needing me so much, but I feel confident that it won't be too much longer.

One of the places we are discussing is about a half hour north of San Antonio. If anyone is interested, they can check out the website by clicking here.

It sounds good, huh? Now I just need to work on me trusting another place to take care of him as he will go alone to this. I have to admit that that trust is gone and I'm not sure if it's going to come back. I'll work on it though.

So anyway, that was pretty much it today. I am going to just hit on a couple comments. There are a bunch, but I want to finish my book tonight so I will get to the rest over the next couple of days.

First - Janet - did Matt end up being okay? It was so nice seeing you - even if it was while both our kids were in the ER. And yes - Kev definitely knows who you are. He is not good with names, but when I mention you I say "the woman that went with us to Chick-Fil-A that day". He knows exactly who you are as soon as I say that, lol. Anyway, if you are still here - call me and you can go out with Moe and I for dinner one day this week.

To everyone that mentioned that Kevin and Breezy's bond is strong and that's why he was able to sit so long in the ER - I agree. He was very upset. But you know what - even with that, he still has to be able to handle all of the stimulation and this just shows again how far he has come.

Michelle Long - you asked if the band played their song for Kevin - LOL - I have no idea. I had earplugs in and couldn't clearly hear anything. Love these guys - but this music is just not my thing.

Ok - enough for now. I really want to finish The Lost Symbol. I just love Dan Brown and am so close to the end of the book!

Day 510 - Oct 21, 2009

You would all be so proud of Kevin today. And Breezy too!

We went early this afternoon to his neurosurgery appointment and before we even got to go in, Breezy called just sobbing from the hotel. She was in excruciating pain, and we had no idea why.

Kev and I quickly left the hospital, but before we even got to the car Breezy was having trouble breathing. I had her call the front desk and get an ambulance and we sped back downtown from the hospital. We pulled in at the same time as the paramedics and quickly went upstairs.

They ran vitals on her and they were all fine so after discussing it, we decided that I could just drive her to a hospital instead of taking the ambulance. We just don't have insurance anymore and it's just so expensive to take that little ride.

So we got to the hospital and ended up waiting for about 4 hours until she could finally go back in to see a doctor. She lay on the bathroom floor the whole time because she was continually vomiting from the pain. I ran back and forth from the bathroom with Breezy in it to Kevin in the waiting room like a chicken with my head cut off.

We did finally get in though and after running all of the tests it was found that she has a kidney infection and a kidney stone.

She did so well, but she swears she is never having kids if this is what it feels like. We shall see, huh? LOL.

And Kevin did a fantastic job too. We were there just shy of 8 hours and Kevin sat there the whole time. He got restless a couple of times, but I just walked with him some. I did have to leave Breezy for a short while at about 7pm though because none of us had eaten yet and Kevin was starving. But then we returned and Kevin just sat there real quietly. Thank goodness I grabbed his Zune (although I have to remember next time to grab the charger too).

So our day really didn't turn out like I thought it would. I wanted to talk to the neurosurgeon and come up with a plan because we just can't keep staying here. My dad has cancer and I want to get back home to be with him and my mom.

I did manage to talk to the surgeon though on the phone this evening and we have sorta turned the drain off and now we are going to see if his glands may kick in and start working. If they don't - then we need to figure something out as the fluid is still coming at a rate of about 30ml in a day. It hasn't lessened at all in all of these weeks.

What to do...what to do...

And now I am going to go and just sit here for a bit. Kevin was nauseous most of the night and morning so we didn't get much sleep last night. I can't believe he is still awake in his room...

Day 509 - Oct 20, 2009

Guess what Kevin and I did tonight? We played UNO! I tried this with him a while back, but he just couldn't comprehend what to do, but tonight - he creamed me! He definitely doesn't know his colors (even red, but he can say it), but he can copy what he is seeing for the most part (although he did miss some of the cards sometimes). I am making him say the colors while we are playing so hopefully he will at least get these four down pat soon.

He is also able to say "UNO" very clearly, but at times he says "Olah", lol. I also deliberately don't do things I am supposed to do, trying to get him to 'catch me'. Sometimes he sees it, sometimes he doesn't.

I have been actively trying to get him to do mind challenging games lately. He is now addicted to something on his Zune, which is kinda like a Tetris, but the clusters turn. I have no idea what it's called, but he sure is playing it a lot.

I really think these things are making a difference in his cognitive abilities. He has been able to pay attention a little bit better lately and his problem solving capabilities are increasing as well.

And guess what else? Moe is coming here to Texas on Friday for a week! It looks like we are going to be here for a bit yet and she was supposed to be coming to Florida, but we aren't going to be there so I guess there's no sense in that, lol. We just rerouted her and now she will be spending the week with us here.

It will be good for all of us as it will help us to get out there and do things. I had a talk with Kevin and he agreed to do a couple of 'fun' things (like the Tower of the Americas - I think that's what it's called - and the Riverwalk boat ride). Mostly he just wants to stay in his room so this really will be good for him.

And let me tell ya - he is SOOOO excited to see her! He has been talking about it for weeks, even when we all thought we'd be in Florida. I just wish we were home, but I guess it's just not meant to be...

Day 508 - Oct 19, 2009

My internet is acting very wonky tonight so I am going to skip writing. It keeps coming and going and I don't want to write a lot and then lose it.

Will catch y'all tomorrow night!

Shoot! I forgot!

I forgot to tell y'all about the band being inspired by their visit to Kevin and the other soldiers back in December. After meeting him and the others, they wrote a song titled "Bravery".

This is an outright plug, but the song is only available on a special edition CD available only at Best Buy. The CD is being released Oct 27th.

Here are the lyrics:

BRAVERY
Torture
Myself
Yet I’ve never seen so brave
Remind
Myself
What it takes to keep us safe

And they're forces
Conspiring to
Destroy you and me
And the sacrifices that are made

My heart is broken
Ripped open
I can’t shield my eyes from the truth
My heart was broken
Stitched shut again
By those who bleed for me and you

Deny
Yourself
The huge costs of this machine
Engorge
Yourself
And dishonor casualties

And they're forces
Conspiring to
Destroy you and me
And the sacrifices that are made

Purify
The images of my mind
But the memory stays behind
Cauterize
That moment in my life
The memory comes back to life

Pretty cool, huh?

Day 507 - Oct 18, 2009

Yep, Anne - it was Kevin's favorite band - Atreyu! Sharrin, from Hollywood Records, called us the other day and was so excited because the band was going to be in San Antonio last night. When I said the stars were all lined up for this it was because she was going to wait until next week to call us as the band was going to be in Orlando next Friday and they were going to invite us out to see them. But, something compelled her to read the blog and catch up before calling and that's when she saw we were in SA! And even funnier - our hotel is right across a side street from where they were playing!

So yesterday afternoon Kevin, Breezy and I went to their sound check and that was the photo you saw last night. It was so cool to be part of something that so few rarely get to see and Kevin was ecstatic! After they were finished with sound check, they invited us all into their tour bus to visit for a while. How cool is that?!

Here are a few photos of the afternoon:

This one is Marc's amazement at how far Kevin has come since seeing us last December. He waited til Kevin turned around to show his shock. Love this photo!



Here we are with Brandon before sound check. We don't get many pics of the three of us so I wanted to throw this one in.



Kev and the band:



This is Kevin and Alex:



Kevin smiling, lol.



Kevin enjoying the music.



This is us going into their tour bus:



I have to tell you - these guys are so awesome.

So after sound check, we let them relax before the show and we went to dinner and then Kevin and I went back for the concert. I really didn't think Kevin was going to be able to handle it, but he wanted to go so we did. He did so well! We had the opportunity to stand right up front, but I know what these concerts are like so we stayed in the gated area that had the sound and lights board. This way no one could accidentally grab the tube in his head or even just hurt him in some other way. I'm such a mom, huh? LOL.

And here is a pic of Kevin and the guys 'posing' after the concert. We went to say goodbye and I just had to get a group photo!



But anyway, he did fantastic! I will say that this day just plain exhausted him though, but I would hazard a guess that Kevin felt it was worth it. I know I did because he was just grinning from ear to ear all day!

And unbelievably, we both slept 11 hours last night. We only got up twice for pills so it was a great night for sleep. I am thinking we should just become groupies so that Kevin sleeps better, lol. (although my ears could NEVER handle that! I so don't 'get' screamo music!)

And today we went to Target for some food and we came back to the hotel and sat outside all afternoon. Kevin played games on his Zune (thankfully it came back from downrange), Breezy played Farmville on her laptop and I read a book. And they have grills here to cook on so we BBQed and just stayed in all night.

A very nice, relaxing day!

Day 506 - Oct 17, 2009

I would do anything to have the energy to tell you about our wonderful day, but since I had gotten that 5 hours of sleep yesterday afternoon - I didn't sleep a wink all night. I am so exhausted so I am going to, once again, have to stall this post until tomorrow night.

Sorry everyone. I will tell you though that Kevin was amazing today! Simply amazing!

And just to give y'all a little hint, here is one photo from this afternoon:



I will try to post through the day tomorrow so you don't have to wait so long...

Day 505 - Oct 16, 2009

Well, we had the date wrong for the surprise - it's actually tomorrow afternoon and evening. I can only tell you this much - Kevin has been told what is going to happen tomorrow and he is simply ecstatic! It's actually going to be a two part day as we weren't sure he could handle the stimulation from the evening portion. To be honest though - it's the afternoon part that will be the most special as it's something very few people get to see. I'll bet it's killing ya, huh? LOL! I wish I could tell you, but I can't yet. I need to talk to the promoter about details first.

So today was a good day for all of us. Breezy took Kevin to therapy today and I went back to bed. They came home from the hospital to find me in bed so they took off and went to the mall for a while.

I got to sleep for a full 5 hours! It was just so wonderful as it was uninterrupted sleep. I rarely get that as Kevin doesn't sleep much and when he does, he wakes up constantly.

But anyway, I was told Kevin had another amazing therapy session with Pam and I am so happy to hear it.

We did increase his morning and night pain meds and I am happy to say that we didn't need any breakthrough meds at all today. I can only hope this controls it. I hate having him in pain.

So now I am going to just hit on the rest of the comments from the other night.

Patricia - I like the pen and paper idea to add to the timer situation.

To Anonymous that suggested an activity while waiting in a doc's office - it sounds like it would work, but we have already tried this. We do usually try to keep him busy for a bit, but sometimes he just can't handle even that part. It depends on how many people are waiting too and if it's just all around a busy place. This (like everything we do) depends on so many factors that are out of our control.

Amy Grace - I have often thought about moderating the comments too, but I just can't do it. I agree with Denver about freedom of speech being what Kevin has fought for. I also agree with you that it's the only way to eliminate this person or persons from instigating trouble, but to be honest - I really could care less about what they say. They are only here to hurt us, but they don't hold that power over me or the kids (Kevin because I don't tell him about it). As I said the other day, they don't have any bit of understanding of what our lives are like so they aren't posting with knowledge of any kind - they just like stirring trouble. I say ignore them. That's what I do because the posts aren't worth my attention.

To anonymous that commented about Amy Grace's suggestion - I don't think she was so worried about me seeing the comments as much as the comments being kept going back and forth. Amy was suggesting it to get rid of the people using this blog to stir trouble with the readers.

I do have to say though that I made it well known in my very first post on this blog that there will be times that I am swearing my head off. I would suggest that this blog be read previous to allowing children to read it. I do not swear often, but when I am boiling mad - it happens. Just my .02 as everyone has the right to raise their kids as they see fit, but it would concern me if small children were reading this on their own.

Tricia - I agree that it is necessary for me to have some 'Leslie' time too, but it so rarely happens. Kevin was starting to adjust to the aide that came to our home everyday and we were so close to me having some of that time, but then we came here. I told him the other day that Parshall called to ask about him and he didn't remember who that was. I am hoping when we get home and he sees her he will remember, but I'm afraid we might be back to square one on him adjusting to help.

To Evan and Kyle - I wish I could laugh with you guys on this, but it really isn't as simple once that logic is gone. I am glad it made you guys laugh though - Kevin would love that! Hope you do come down soon.

K in Canonsburg - thanks for the link. As soon as I know we are heading home I will order one. This was truly a combined great idea.

Sgt Social Worker - I am thinking it was the brain injury assoc of FL that I called and left a message with and never got a return call. I will look into it again when we get back home. Thanks for reminding me.

To MLG - we pretty much already do the time out, but I don't think he understands or he forgets too quickly. Not really sure. I have never said the word 'time' though so maybe I will try that.

Liz, SA - yep, his hair is long. It needs cut again, but I won't do it until that tube is out of his head. I am a little concerned though because it is starting to all fall out. Not sure what that's about yet...

And I guess I have written enough for tonight. Stay tuned for some amazing photos and what I hope to be a super post tomorrow night!

Day 504 - Oct 15, 2009

Today was a pretty good day. We actually got a lot done. Kevin went to therapy and his beloved Pam was there. They worked a whole hour on his arm and made great strides toward kicking some butt with Botox. While he was there, I quickly ran down to the Pharmacy and picked up some new meds and I think Kevin needed to be away from me just as much as I needed a break from him. We all know he loves Pam so I knew he would be in good hands. Here is a photo of the two of them today:



And today we also now have a consult with a pain clinic to try to get a handle on all of the pain meds Kevin is taking. I have been asking for this for months and I am so glad it is finally happening.

We also have a neuropsych consult in so that someone can give me some advice on how to handle Kevin when he is doing some of the things he is doing. This was something we were supposed to be having all along while at the VA, but it wasn't happening. Not once did anyone sit down with me and give me advice on how to deal with these behavioral issues and when we were being sent there we were told it was part of the in-house treatment plan.

So anyway, it seems like we really accomplished a lot today.

And tomorrow should be an excellent day! I don't want to say anything yet, but Kevin is in for a real treat tomorrow! I wish I could tell you guys, but I didn't make sure it was ok to beforehand so I am going to wait until tomorrow night. Let me just say - he is going to be so excited! (The stars really lined up for this one!)

And I know I have more comments to touch on, but I am going to skip it for tonight. I am coughing like crazy and I have to stop typing every couple of minutes to have a coughing fit. Hopefully I will feel better tomorrow night and can get back to it all then.

Day 503 - Oct 14, 2009

Today was a better day. Kevin was in a better frame of mind and was even patient while waiting at the doctor's office for him to get out of surgery - and this was after driving around for a half hour trying to find a parking spot. We actually missed our therapy because we couldn't find anywhere to park, which is just not good.

And unfortunately, we still need to leave the drain in his head because he is still putting out the same amount of bloody fluid (about 30 ml a day). We are becoming used to it now and have figured out ways to 'rig' it with a safety pin so that it stays up near his neck and doesn't hang down painfully. We tape it to the back of his neck while he showers and it's really working - like things always do once you figure out how to get around the rough spots.

And now I am just going to touch on some of the comments today as there were some great ideas.

First - to the people that seem to despise the three of us - you don't bother me. See, I know the truth about what our lives are like - you don't. You ASSume you know, but you honestly show your ignorance by posting things that are not true.

This is also true of and I also feel sorry for the person that turned this into a money issue. Someday, I hope you realize that life really isn't about money - it's about loving your family and friends and feeling bad for the horrible changes in life.

As to the person who offered me a tissue - thanks. I'll take that tissue! Some days are harder than others in dealing with the magnitude of our loss and on those days I would love to learn how best 'to deal with it' as you requested. Maybe next time - instead of being nasty - you can offer some good advice that might just help.

Lisa D in Cali - Kevin isn't really willing to negotiate very often. I don't know if he understands the concept or not, but for the most part he is just too set in his ways.

To mamaworecombatboots - I never once thought about this being like autism - especially Aspergers. I will definitely research this as it sounds like Kevin and your daughter have a lot of the same symptoms. Thanks! And best of luck to your daughter too!

Alison - Sometimes Kevin's short term memory works - sometimes it doesn't. Sometimes his long term works - sometimes it doesn't. He also can write only a few words. He doesn't know how to spell anything as he doesn't know his alphabet anymore (but he knows his numbers and can do math quite well). And your idea fell in with Long Time RN's so I am going to move onto hers.

Long Time RN - I like the idea of the timer. I don't know if he would understand though. Right now he has a watch that he looks at constantly (he can tell time) and like I said - one minute he looks at it and understands, but then the next he loses the brain function and he forgets. The timer is something I am going to try though. You just never know. Great idea!

To Janet - I know you called me yesterday, but I haven't had time to even listen to the voicemail yet. I hope Matt is feeling better after his surgery? Did they get the equipment necessary to exercise that arm/hand yet? Love ya!

Miss Em - (how are you recovering from the floods, btw?) - you expanded on Long Time RN's idea with the timers. It is definitely worth a try. You also mentioned having other therapists sit in with Pam until Kevin gets used to them. He has had others in the past and sometimes he is willing to deal with it, but mostly he is not. It's really Pam's fault as she is just so dang wonderful (right, Pam? LOL) Seriously tho - they just have such a bond and he looks forward to seeing her and gets upset when she's not there.

Ok - there are more, but I am trying to get sick and need to get to bed. I have been coughing for days and I feel so run down. I have a couple things to do first, but then I am down for the count.

Day 502 - Oct 13, 2009

I think the hardest part of all of this is the frustration. It is just so damn frustrating trying to get Kevin to understand how important things are. He went to therapy today and Pam wasn't there so he didn't want to do his therapy. He just doesn't understand people needing a day off and he doesn't understand how important therapy is either. So he left.

It's even more frustrating to me because I DO understand. I just can't get Kevin to - no matter how hard I try. This causes both of us to go to our corners and cool down for a bit, but then what? Nothing. Because he still doesn't understand and to be truthful, he's already forgotten that we didn't agree on an issue.

And this is just one point of the day. Here's another one - he hurts. I give him pain pills. But they don't work immediately so he wants more. One minute he will watch the clock (knowing there's a 30 min window before they will work), but then he starts screaming because they haven't helped yet. It's like for a second his brain works, but then it doesn't. I have to stand next to his bed sometimes for a half hour just trying to get him to remember that his pills take time and that he just got them 5, 10, 17 (or whatever) minutes ago.

And then there's dinner. Kevin has dinner patterns. For example - we must find a Taco Bell with KFC included. He MUST have a large popcorn chicken with honey mustard sauce and a soft taco with mild sauce. If one thing is missing - he won't eat any of it. Yesterday they didn't have the honey mustard sauce. So I had to hold up the drive thru while we returned all of the food. I tried to get him to eat the taco, but he was not gonna do it in any way, shape or form.

It's frustrating. SO, SO FRUSTRATING!

And then there's his pills. The meds are different here in a military establishment than they are in a VA hospital. You might have one pill in FL, but here you need 4 to get the same dosage. Kevin just REFUSES to take pills that are different. He checks them over each time he needs to take them to see if they are right. One of them is ok because a long time ago he had green pills. When we discharged from the VA they were brown (went through all this then too) and here they are green again. He was so excited to see the green ones - almost like he found an old friend.

And let me tell ya - I don't know how many doctor appts that we just left from because he doesn't understand the waiting part sometimes. I play this juggling act trying to get docs to understand that Kevin really can't wait long and that we can't get there in the early morning because it just takes too long to get his morning routine taken care of. Sometimes the docs hear me. Sometimes they don't. Sometimes he will sit there and wait. Sometimes he won't.

And let me just jump in here and mention that someone posted a few weeks ago that Kevin needs to learn who is in control...

I actually was surprised when I read that, but then I realized that that person just doesn't have a clue. I have really tried to educate everyone on what this is like, but I just think some (very few) people either don't want to hear the truth or just can't comprehend it. So think of it this way - would you say that about a person with Downs Syndrome? Or a mentally retarded person? Honestly? I doubt that you would. And to be blunt - Kevin is mentally retarded now. He lost function in half of his brain, which is essentially brain damage.

So please, this is just me ranting about a crappy day. I don't need any negative comments, what I need is advice on how to work through the frustration that is with us every, single day.

After all, Kevin is not gonna change overnight. Maybe someday it won't be like this, but for now - it is.

Day 501 - Oct 12, 2009

I don't really have much to say tonight so I am going to just touch on two questions/posts in the comments from the last few days.

Anonymous - I read the story on CNN of the woman born with half a brain (thanks for mentioning it). Amazing, huh? I was told sometime over the last year and a half that age matters when it comes to rewiring the brain and this just proves it. Her brain has been rewiring since birth and look how far she has come. Kevin was wounded at 19 and he has come a long way too and he still has many more years of healing in him. If anyone wants to read the story CLICK HERE.

To the other anonymous poster that asked if we were still planning to renovate the video store - we put that on the back burner for a bit. I was told it would be like $30,000 and I just can't see spending that kind of money. I do want to look into it further someday down the road and see if it really will cost that much, but we need to get things more stable first.

And other than that, I honestly don't have much to say tonight. We did go to a store to buy some 'fall' type clothing as it's a little cold here, but Kevin got so over-stimulated that we really just came back to the hotel. I don't remember it ever being cold here, but apparently it can be. Because we thought we would only be here a week or two, we only brought summer clothes - shorts and flip flops - so we all need to pick up some pants and at least a jacket.

And that's it. I am going to head to bed early tonight.

Day 500 - Oct 11, 2009

Day 500. Wow. Sounds like a lifetime. Feels like a lifetime.

It's just so hard to believe that we have been at this 500 days. Man, it makes me tired when I think about it like that. So I guess I just won't think about it...

Anyway, we didn't do much at all today. I went to the grocery store and picked up a few things and the kids stayed here. I also did laundry. Isn't that exciting? LOL.

And honestly - that's it. Kevin is starting to feel better, but I noticed that when his drain clogs, he starts to hurt. I keep 'pushing' the blood through as it's needed now that I figured it out. This isn't a very clear picture of what I am doing, but I really don't know how to explain it. I just need to keep a better eye on that drain so that I push the blood through before it's clogged too long.

And now I am signing off for the night. Kevin is still awake, watching Adult Swim (?) so I am going to (hopefully) get an episode of Project Runway in.

Day 499 - Oct 10, 2009

We left the hospital today. Kevin got up this morning and took a shower and felt better so we decided to discharge. It was late afternoon by then, but we got around and went to the hotel.

I don't know how I missed it last night, but when all the lights were on, I realized this one wasn't much better than the first. The room even smelled like cat pee today and I honestly didn't notice that last night.

So I got on the horn and we found yet another hotel and this one is beautiful. It's an Army hotel, but it is only 2 years old so I figured it can't be that disgusting, right? Right. This one is REALLY nice. It doesn't have an oven though, but at least there is a stove top so we can cook some things.

Now we just need to get out and drive around downtown San Antonio to familiarize ourselves with the area. We have been down here before, but only on occasion so I can't just find my way around yet.

And I am really excited to report that Pam (our most favoritest therapist) worked Kevin's arm today and it was about 90% straight for a bit! Since he had Botox, we need to really kick up therapy a notch to make a difference. If Kevin would work his arm even on his own some more it could really help. He does do it often, but I'm going to try to get him to hold it some while watching tv or at times like that.

Oh and if y'all don't mind - can you keep my friend Janet's son in your thoughts for a bit too? He is also here and had surgery yesterday. His name is Matt.

And now I am going to sign off and just lay here and do nothing. Kevin is watching a movie so I may get a few minutes of quiet time...

Day 498 - Oct 9, 2009

The hotel is all taken care of. Thank goodness! I was so worried that we would check out today and have nowhere to go. I believe a Col got involved from Ft Stewart and things just miraculously happened. Matter of fact, I was told to go to any hotel I wanted and it would get covered. So I did. I booked us rooms at a Hawthorne Suites because it is basically an apartment. We got two rooms - Breezy has her own and Kevin and I are sharing a 2 bedroom suite that has a full kitchen. I just can't wait to stuff a turkey or a chicken or something (have y'all figured out that I just LOVE stuffing? LOL). We are all so darn tired of eating out!!

But, we didn't leave the hospital today after all. I had the option of going to the hotel with Kevin, but I just wanted to make sure we had his pain controlled after last night's incident. He did pretty good most of the day, but he was in more pain this evening so I am glad we stayed. I may decide not to discharge us tomorrow too - I need to think about it. I will see how he handles his first shower tomorrow and go from there, I guess.

So here's a photo of Kevin from today. His head is still a little swollen, but he is lookin' good, huh? I just so hope that we don't have to remove that plate!



Look at his trach site! It is gone! Impressive, huh? It looks like they are going to have to fix his one eye because the doc put too much skin there and he intends to do it the same way he did the trach area.

And we decided not to fix the area above his lip on the left side. It is very taut and you can see how it is pulling his lip upward, stretching it quite a bit, but it is a major surgery apparently. The surgeon said he would basically have to cut that whole muscle out and rebuild it. He doesn't suggest it and after hearing that, I agree.

And now I am signing off so that I can finish watching 'Hitch' with Kevin. Will Smith is so awesome, isn't he? He can always make us laugh!

Day 497 - Oct 8, 2009

Well, the drain is in place and things were really good most of the evening. If I would have written this post an hour ago you would have heard how this procedure miraculously fixed Kevin, but a while ago he just started screaming in pain and he was pretty much uncontrollable. He said his ears were making noises inside (told by him touching his ear and saying "ting, ting, ting, ting") and we just couldn't control his pain whatsoever. And you just had to know that his IV chose that moment to quit working so we couldn't even administer IV pain meds. Grrr!

So anyway, I am guessing that the bandage that was wrapped around his head was just too tight. He has not been able to wear anything much on his head for so long due to the pain so the doc took it off and re-bandaged it more loosely than it had been. Between that and the shot in the butt - he is now happily munching on sour skittles and watching a movie.

Matter of fact - here is a photo:



And the surgeon told me earlier that when they cut into Kevin's head today about 200 CCs of bloody fluid streamed all over the bed. That is a whole lot of pressure - once again.

Now hopefully the pain will start receding completely tomorrow. Next we just need that darn bug to go away. The neurosurgeon is discussing starting Kevin on an even stronger antibiotic for MRSA and we will make the final decision on that one tomorrow after he talks to the Infectious Disease docs.

And I guess it's come down to me having to use one of the contacts that I made while in DC. I have been asking to be able to move to a cleaner hotel as this one is so DISGUSTING! They finally scrubbed the carpets a week or two ago (after 3 years) and it now smells so bad like dirty, wet gym socks. It was ok for a couple of days, but it is now back to smelling. Not to mention that if you happen to go barefoot for even a second, your feet turn completely black - and this is after they were scrubbed.

So anyway, our nurse case manager at Ft Stewart told me I could go to a different hotel but there were stipulations and I can't do them because I am not military. My case manager here didn't bother to get back to me today, so I guess I need to call someone to help me out. I cannot take Kevin into such an unclean environment with this drain in his head. I just won't do it.

Ya know...I don't mean to be rude, but I wish these people could go through this just for a week so they would have a real understanding of how they need to really do their job. They are here to help us, but mostly end up causing us more work and way more frustration. We are to be discharged tomorrow and I really don't have anywhere to take Kev yet.

I just know that someone better do something real early in the morning or the shit is gonna hit the fan! Maybe I'll just google our case manager and show up with all our bags at her house tomorrow...wouldn't that be funny?

Day 496 - Oct 7, 2009

Early post tonight...

Ok, there are so many variables that affect any decision I make about Kevin's treatment, but after days of thinking about it and a long discussion with the neurosurgeon today, I decided to keep a conservative approach for at least a few more weeks. Truthfully, it could bite me in the butt, but I still think it's the best choice right now.

Because Kevin can't secrete this fluid back into his system (which is actually a good thing as it's (hopefully) keeping the MRSA localized), we are checking back into the hospital in a couple of hours and tomorrow an external drain will be put into his head. This will enable the infected fluid to drain out of his head and into a bag, hopefully ridding us of the infection within a few weeks. Realistically - it may not work at all, it may work for a few weeks or months and finally - it may miraculously take care of it completely (slim odds on this one). After a day or two we will be going back to a hotel (but not this one as it is just too dirty for me to allow an open drain in) and I will maintain the external drain and bag.

The doctor is hoping it will clear the fluid buildup within two weeks, I am not so sure. Although this has nothing to do with his shunt as it is still working fine for the fluid inside of his skull & plate, we know Kevin's 'glands' (or whatever they are called) in his head were severely burned and that's why they aren't working now outside of his skull. I guess I just don't understand how it's going to clear up if it's really a gland problem and not the infection problem? Oh well, I just hope he's right and I'm wrong.

So if it doesn't work - the plate will become infected and then it's a definite removal. I guess I am just prolonging what is a probable outcome in the hopes that the antibiotics work. Time is seriously going to tell on this one.

I don't know if I will have internet or not over at the hospital this time, but hopefully I will. If not, just know I will catch y'all up as soon as I can.

Day 495 - Oct 6, 2009

I am pretty much going to skip writing tonight. I am just too tired to think so I am just going to hit the hay early.

Before I go though - Janna - I finished reading "The Shack". Very interesting read! In the beginning I just kept thinking "Oh no!", but I remembered you or someone else on here telling me to stick to it so I did. Thanks so much for sending it to me!

And wish us luck tomorrow! We go to see the neurosurgeon in the afternoon...

Day 494 - Oct 5, 2009

Only a day and a half more before we learn what the future holds. I have been just pretending that all is well, but at times it kinda creeps into my head that it can all come crashing down - again.

I just can't imagine having to remove the plate from his head. It will limit the things he does for fun and it's already so limited that it won't leave much of anything.

And I can only hope that we don't lose the Kevin that he has become. Although he is very demanding and tyrannical a lot of the time, he still has moments that he is so much fun to be around and we have a good time. I don't want to lose that person. I worry about us going back to who he was before - the person barely cognitive.

I know that the pressure in your head has a lot to do with function, but maybe having the shunt working correctly will make all the difference this time.

Or maybe we won't even need to take it all out, huh? Oh I so hope that's the way of it! I just want this infection to go away so that we can go home and continue with therapy and just all out getting better!

Day 493 - Oct 4, 2009

Our days are getting somewhat better now that we are managing Kevin's pain a little better. I am trying to take him out at least once a day for short outings, but I also know that he needs rest more than anything.

Today we went over to the family center and spent over an hour there. It's a huge building here at Ft Sam for wounded soldiers and their families to go and hang out and do things - play games, watch tv, eat, rent videos, scrapbook, etc.

We went over today and Kevin just ate and a really nice volunteer sat with us and talked for quite a long time. What was really nice was that she spent time talking to Kevin and not me - something that is rarely done. Most people ignore him completely because he can't talk and although I always try to pull him into the conversations - it rarely works. He so enjoyed the attention!

Other than that, we didn't really do much. We got movies while at the WFSC so Kevin came home and watched a couple of them. Now he is in his room trying to go to sleep and I hope he falls soon. He gets so upset when he can't fall asleep...

Day 492 - Oct 3, 2009

We had a decent day today. We are keeping Kevin medicated before the pain is breaking through instead of waiting for it and then making him suffer for 30 minutes until the pills start working.

So far, so good.

We did run to Wal-Mart today because Kevin told me he wanted to color (took a while for me to figure that one out). So we went and bought coloring books and crayons and the kids and I have been coloring for a couple of hours now. I was amazed because Kevin's book had those word searches and mazes and he zings though the mazes super fast and he is at least trying to do the word searches. He can do the straight across words, but he just can't find the diagonals or backwards. But still - he is trying and that's a great thing.

And before I forget - yes, Kevin is allowed to go anywhere he wants. We also had permission to go on the boat ride and do whatever we wanted last week. For the record, I don't take Kevin unless it's ok'd by the docs (in this type of situation anyway). Sometimes I'm not told that I can't do something and I do it not realizing, but mostly I ask. I think at this point y'all are just going to have to trust that since I am here (and he's my son) - I pretty much know what's best for Kevin. And I know that I may make mistakes, but that's inevitable. My plea would be that I just don't get called on the carpet for making those mistakes as I just can't be perfect - no matter how hard I try .

Which, by the way, brings me to another point. I, more than anybody, know that Kevin will react to how I feel in certain situations. Because I know this - he rarely sees what I am feeling - especially in times of extreme frustration. What y'all see is the place where I can come and vent about what I feel/felt. That's what this blog is really all about. So I come on here, let it all out, and that ends it. But somehow, some people assume that because I lay it all out here, I lay it all out for Kevin to see. That's just not how I work. And I have to admit to always being curious how people "know" I did something without being there?

Just my two cents. But I guess I am just asking that people maybe not jump to conclusions based on the small window that I give people the opportunity to look into our lives through. There is so much more that goes on in our lives that I am just not putting out there.

Oh - and I want to quickly admit that any and all advice is always heard. I do read every comment and I always appreciate the advice we do receive, I just think it would be nice if the advice could be given without accusation as it is sometimes. Know what I mean?

And on that note, I am going to end this post. Please don't anybody take this as me being angry or slamming anyone. I am not. It's just li'l ol' me asking for some slack in a really rotten situation.

Day 491 - Oct 2, 2009

Well, we didn't sleep at all last night as Kevin was in a lot of pain again. The problem is that his head is filling with fluid where he was operated on. It's stretched so large and it is incredibly painful. He pretty much screamed and cried all night long. Luckily we had a doctor's appt this morning and we did end up draining about 60 CCs of fluid today and it just so reminded me of the old days.

And to make matters so much worse...Kevin has tested positive for Staph(sp), or MRSA - whichever you want to call it. I just broke down when the neurosurgeon told me this. It's just so scary.

So I guess we have two options on how to deal with it:

Conservative - where we try antibiotics for a while and wait for a new culture to come back and see if the results were wrong.

Or Aggressive - where we just go in and remove everything. All of it. The putty and the plate. There are so many variables to this one and I really am too tired to get into them all, but Kev would have no skull again and he would have to be infection free for 6 months before having it replaced. I am also not sure where we would be - in Texas or Florida. I really don't want to be in Texas as my dad is just starting his chemo and radiation. But I won't see the neurosurgeons at the VA so I would have to see if the new guy we didn't even go to yet would take us on. There are just so many things to this option...

So we decided to go with conservative for 5 days and then we will probably have to remove everything if things aren't working by then. Wednesday will be the day and it's going to kill me waiting to see what is going to happen.

I just can't imagine having to go backward. Frankly, I'm not sure I have the energy to do this all again and I'm not sure I can keep Kevin from giving up. When we were talking about having to remove it all with the surgeon, Kevin just kept saying "NO!" because he is just as tired as I am. He has just been through so much and I have to ask - when will it end?!

Day 490 - Oct 1, 2009

Kevin is still hurting and he wants me to lay down with him until he falls asleep. The odds are pretty good that I will fall asleep as soon as he does so I wanted to quickly write something just in case.

If I don't, I will come back and write some more.

Day 489 - Sep 30, 2009

We are back at the hotel tonight. Kev is still in a lot of pain, but I feel more comfortable managing it and at least here he can get some sleep. I was so upset last night because they came in at 1am and woke him up just to ask him his pain level and then do an assessment. WHAT?!! He was sleeping - it was zero!

We had a decent stay at the hospital until last night and that was just it for me. The nurse we had was rude and interrupted his sleep numerous times throughout the night - even after I told her to get out. All of that caused him to be overstimulated and he was just screaming intermittently by daybreak.

I should mention that we weren't in the burn ward this time as it was full and I believe that is why we had a problem. The burn ward knows us well and works with us to ensure Kevin is well taken care of.

And now I am heading to bed. We are both just so tired from no sleep last night and I keep nodding off when my fingers stop typing for a minute, lol.

I know I have a bunch of questions/comments to address and I will try to get to them tomorrow night. I am just too tired tonight...