Sunday, August 31, 2008

Day 92 - Aug 31, 2008

It is just amazing how much progress Kevin has made in just the last two days. The doctors are impressed and so am I! And get this - we haven't even started rehab at all yet! (it is a holiday weekend) But anyway, Kevin is always aware of what's going on around him now. Always! I have seen no moments where he just stares at the ceiling and his eyes never seem to be confused. He always looks at you when you talk and if you ask him to do something, he usually does it. When we go near him with his eye meds he is now cooperative and immediately rolls his eyes upwards. He is also making all kinds of noises and when you ask a question, it seems like he tries to respond (but you can't understand what the noises he is making mean). So all in all - I think this place is going to be awesome. And I can only guess that the reason he is doing so well here is because the nurses sit and talk to him if we leave the room. He has someone sit in his room the whole time we are not in there and they just tell them all about themselves and their family and whatever else they can think of. And although I loved the hospital and staff in Texas, very few nurses did that. What a difference.

I did get to go see his new room today. He is in a temporary room until all his tests are finished to make sure he is stable enough to progress to the rehab floor. They are saying Tuesday he will be moved, due to the holiday. Anyway, it's small, but it will work. I like the fact that they have flat panel TVs that come down right in front of your face over the bed for the patients to be able to see it if they have vision problems. They are very aware of everything here. I just can't wait to see what happens. They are expecting to remove his trach and possibly his catheter this week and will try to get his feeding tube out asap as well. I can't wait for that! I just can't imagine not eating for 3 months!

Speaking of eating - I made over medium eggs for us tonight! Yep - I cooked!! It was like heaven! And one of the nurses took me to the grocery store (and the cell phone store) today so you had to know that I bought a small chicken and the stuff to make stuffing, mashed potatoes and garlic green beans! It's all on the menu for tomorrow - YAY!!

Now to answer some questions:

Lisa - I did get the red envelope. Thanks! And we can't have mail sent to the place where we are staying so I have to go get a PO box. I will let you know what it is asap. And I will post Kevin's here as well once we get him to his permanent room.

Michelle - his trach has been capped for weeks now, but I learned the other day that nearly 85% of the left side of the brain was destroyed. The speech section is typically located on the left side, which is why he doesn't talk yet. If the brain rewires, he may be able to someday (maybe soon, huh?).

Linda - if it's not too late, Kevin would probably love to be in the calender. You can get my email from work if you still need it.

Jim (173rd) - I am so glad you posted as all my voicemails were deleted when I got a new phone today! I will call you tomorrow (or you can call me if you want).

If I missed anything - please let me know. I am trying to get all caught up, but my inbox is just so huge!

Well, bedtime for me. Have a good night, everyone!

Saturday, August 30, 2008

Day 91 - Aug 30, 2008

I have not slept for over 36 hours and I am just plain exhausted! This is going to be a short post so that I can get to bed. But, I just wanted to tell everyone that we made it safe and sound. Unfortunately though, they were not prepared for us in the least. None of his medications were on hand, and they didn't even have any of his food. He just now started on food about 3 hours ago. Yes, he has went about 30 hours without anything in his belly. What was even worse is that when they did round up all of his meds (blood pressure, insulin, anti-spasticity, blood thinners, and the list goes on and on) they gave them to him on an empty stomach and he would just throw it all back up. They did find a different kind of food for him sometime this morning, but that came back up as well.

They also didn't have a bed for him (he needs a special one for his burns I guess because after laying on the 'normal' bed for a night or so, his donor sites were bright red and he was in pain). They are in the process of getting him one, so hopefully it will be here tomorrow.

I was also very disappointed that our SA hospital gave us 2 pain medications in pill form. Ummm...hello...Kevin has a feeding tube. He can't swallow! So when he was in pain while in flight, there was nothing we could do. Very upsetting!

But alas, we are here. I would not leave the hospital because nobody seemed to have a clue about his 'issues' and I just didn't feel like I could leave him there alone. I have to tonight though, I am just too tired to be any good to anybody right now. Y'all know that I left implicit directions with the nurse though, right? LOL!

So to end on a good night - all of the docs that we did see were very surprised that Kevin is doing as well as he is. I guess they didn't know that he is responding more and more and seems to truly be aware of what is going on around him. He is also making so many noises (started a couple of days ago) so hopefully he will be able to talk again someday! I just can't imagine not hearing his voice ever again, kwim?

And I will say this - Kevin has been very mean and nasty for two weeks or more now. He is constantly pushing us and the nurses and it's been very frustrating and emotionally devastating, to say the least. But yesterday, after flying all day and him being in the ambulance, when we got to the hospital I crawled into the back of the ambulance to just show him a familiar face and he grabbed my hand and pulled me down into a huge hug. He just would not let me go. It made my day! It made me think that maybe he does know who we are, something that I constantly go back and forth on.

Geez...didn't I say this would be a short post?

PS - my phone is dead and I left my charger in Texas. If I owe you a phone call - be patient!

Friday, August 29, 2008

On Our Way!

I just got called at 9am and have to leave by noon today for Tampa!! YAY!! We are on our way!!

Now I have to finish packing everything! Talk to y'all tonight!

Thursday, August 28, 2008

Day 89 - Aug 28, 2008

Well, we didn't leave for Tampa today. Maybe tomorrow - maybe Saturday - maybe Tuesday. Who knows yet.

We had a bittersweet goodbye with Pam (our physical therapist). Yes, we all know we need to go, but she has become like family to us. To all of us. I wish we could take her with us to Tampa. She is actually off this weekend so we have to assume we won't see her until we come back later on down the road. Goodbye, Pam!

Nothing much else happened today. It was truly one of those days where you had a billion meetings and talked to everyone and their mother. I guess it's just about getting ready to go.

So I am going to cut this one short and read a book tonight. Here's hoping for a Friday departure...

Wednesday, August 27, 2008

Days 87 & 88 - Aug 26 & 27, 2008

First let me say - WE GOT ACCEPTED!! Now we are waiting for the news on when the flight will be. I am told it will be anywhere from 24 hours up through 10 days!

Kevin does seem to be more aware lately. We had a long 'talk' about what it will be like in Florida and although he doesn't exactly respond, he does seem to listen. I think this is going to be good for him. He needs the stimulation and the activity.

We had planned to go to the gym today and play on the Wii, but when we got there Daniel came in. (Daniel was with Kevin at the time of the attack). It was a very hard moment for all of us - it was the first time they saw each other. I am pretty positive that Kevin was crying because his eyes got bloodshot and he had tears. Daniel was upset too, but he handled himself really well. I liked how he still talked to Kevin even though it hurt him deeply to see what Kevin has become. There were definitely tears all around during the exchange.

So after this, we decided to go outside rather than play the Wii. Daniel needed to do his PT and we didn't want him distracted by Kevin. We went outside for at least an hour and truthfully, Kevin slept the whole time. I was told that he only slept an hour the night before - he had a really rough night. I have to wonder if it's because we didn't go see him. We did end up going to the concert. I know...I shouldn't think like this but it could just be. It has to be hard to just lay there for hours with no one to 'talk' to. And for some reason, visiting hours ended at 4 instead of 6pm yesterday so it was even longer than it would have been.

But we did go to the concert and it was a good time. I have to be honest - I really love Texas - but they do not party like Pittsburgh does! I can't say I have ever seen Petty only do one encore - basically cause the burgh keeps chanting - but he didn't play even an hour and a half. And hardly anyone was dancing - very different, for sure!

But, we had great seats! See...

I did have to zoom in to get this, but only 5x. Click on it for a larger image.

So anyway, that's about it for tonight. Maybe tomorrow we will have a firm date for flight. I know that I fly with Kevin on the Med flight, but Breezy goes commercial. Tonight I need to start cleaning things up and figuring what I can leave here and what I need to take with us. I can't wait to see what this next chapter brings us...and I can't wait to cook a real meal. Or even bake cookies...raspberry choc chip with pecans...oh my...

Monday, August 25, 2008

Day 86 - Aug 25, 2008

No word on Tampa yet. Grrrr. I guess they needed some more info so it was overnighted today and I am sure it will take a couple of days for them to peruse it so I don't expect to hear before the end of the week. I told my caseworker today that I am done waiting and that we need to start working with him on his rehab here then. This is actually quite ridiculous. It's truly been 5 weeks since we thought we could go, but then they needed the PEG put in and then the shunt and now what? Geez - this is so frustrating.

So I asked her to call Tampa and tell me where to start with rehab. I am not trained for this job and I don't want to start teaching him a bad habit without realizing it, kwim? It's so easy to do, but I am not waiting any longer.

And that about sums up the day. Nothing really happened. Kevin did get into the chair, but we didn't leave his room because a couple of guys were brought over from downrange and we needed to stay out of the hallways today. We definitely don't want to 'catch' any of those bugs again. We need to keep all that afghan/iraq bacteria away from us.

And to end tonight's post - I just want to say that I may not (hold your breath...) post tomorrow night. Yes, I probably will, but I may not. My daughter and I (and about 20 or so other wounded warriors and their family members) are actually going to see Tom Petty in concert. The wonderful thing about this place is that the wounded warriors can pretty much go anywhere in San Antonio for free. To just about any event. This town is so wonderful to its military personnel! There are roughly 15 events a week that a bus will come pick you up and take you to. There are also at least 3 meals a week supplied to the whole hotel by different restaurants - from italian to chinese to pizza and the list goes on - it's always different every week. Who knows...maybe this is normal for military hospital areas, but it still impresses me!

Anyway, I have never went to any of the events - none! It's not really why I'm here, ya know? But my caseworker is banishing me from the hospital tomorrow night, lol, just to make me go and do something other than be here. At this point, I will go. But I am not sure if my guilt and feelings of abandonment will allow me to have to a good time. But I will try - I promise. So just in case - don't panic. I honestly probably will still write when I get home, but if it's too late, I just may not.

BTW, just a little tidbit of information - did you know that more coma patients wake up to Tom Petty music than from any other band? I have no idea where I heard this information from, but they say it's true...

Sunday, August 24, 2008

Day 85 - Aug 24, 2008

I am posting very early this evening because a bunch of us are going to the movies after visiting hours tonight.

To be honest, there really isn't anything to post about today. Kevin did 'talk' on the phone again to a couple of his friends, but not much else happened. Although - we did go outside for a little bit and we got a nasty storm. It was raining fiercely and we stayed under the overhanging roof and at one point the wind blew really hard and we all got sprayed with rain. Kevin lifted his left arm and covered his face when the rain hit him which shows us that he can feel things and he knows how to react to it. We then just went back inside and sat in front of the windows. He was in the chair almost 3 hours today.

That's about it. He was in pain for some reason earlier and I wasn't in the room so they gave him some pain medication. He's not normally in pain, so I am not sure what that was about. Hopefully it was just a fluke.

Let's hope that we hear from Tampa tomorrow. Keep your fingers crossed everyone!

Saturday, August 23, 2008

Day 84 - Aug 23, 2008

Something amazing happened today. While we were in the chair and out in the hallway, I called my nephew Anthony, who is very close to Kevin. I was talking to him about him bringing my car to Tampa in Sept and I told Kevin who I was talking to and then I put Anthony on speakerphone and went to get close to Kevin's ear. dear son literally grabbed the phone out of my hand and put it up to his ear like he was on the phone himself. He listened to every word Anthony said and then he handed it back to me and he next "talked" to my mom, my dad and my sister, Kim - all individually. He was on the phone about 10-15 minutues. He even switched ears and listened on the other side (but not for long, leaving me still wondering if he can hear on that side). So while my sister was on the phone he somehow hit a button and dialed my voicemail. Once the operator told me to put my password in, Kevin put the phone in his lap and flipped it shut to hang it up. He had to have known that that was my voicemail and he had no desire to listen to the operator. I was flippin' amazed! I can honestly tell you that when he grabbed that phone and put it to his ear, I just stared at Pam in shock (the puddle jumping physical therapist) and she just stared at me and then we both got tears in our eyes. It was so wonderfully amazing!

So, on occasion I believe that Kevin is in there. I do. I read your comment Jan, and I do feel that he is aware and does seem to know things at times. It's just that those moments are so few and far between. It's hard seeing him content to sit and stare at the ceiling for hours and hours without even moving. Those are the times when I feel hopeless. When I wonder exactly how much brain damage he truly has.

But tonight, I felt hopeful again. Enough to try to go buy a Nintendo Wii. I know that he can do things with one hand using that system so I figured that might be something that he could just do. Who woulda guessed that you still can't find those darn things! I remember one of my coworkers (Hi Deb!) trying to buy one at Christmas time and they were nowhere to be found. And it's now August! When will these system manufacturers ever learn the concept of supply and demand? That's just nuts!

As to the anonymous poster about the speech therapist...I did ask to see one the other day, but no one has come to me yet. If I don't hear of our acceptance and departure on Monday, I will start 'screaming'. I know Kevin is at least a 9 on the Glasgow Scale so it would stand to reason that we could do this. Unless they are waiting to remove his trach? It could have been removed about 5 weeks ago, but they want to leave it in for his flight to Tampa (just in case). In the interim, I will keep that number just in case. Thanks for the info!

Off to bed for me...Goodnight all!

Friday, August 22, 2008

Day 83 - Aug 22, 2008

Kevin went outside today and we sat just on the edge of the rain, just under the overhang. His physical therapist was out in the rain jumping in the puddles trying to get some kind of response from him, but nothing. We are back to him not wanting to do anything and just wanting to be left alone. I mostly just sat in his room and read a book today, letting him know every once in a while that I was there. It didn't matter though - he swatted me away just as much as he swatted the nurses away.

These days are hard. Hard on us emotionally. I know that this is a normal symptom of both TBI and PTSD, as well as depression, but it still makes it hard on us. We just don't know how to help him.

So there really isn't anything much to say. To answer a quick question to Jessica - Kevin's burns are very well healed already. No open wounds anywhere and even the tendons that were showing are nearly healed.

But that's it. I don't have anything else to say tonight so I am going to cut it short. I am just so tired and have to get the laundry finished.

Thursday, August 21, 2008

Day 82 - Aug 21, 2008

Nothing much happened today. Kevin was taken for a little spin in his chair, but other than that he wasn't really interested in playing anything or even writing on the board. I can only imagine how disgusted he has to be. He has to have 2 eye medications put in his eyes every single hour of the day and night. No 'real' rest for him so he has to be frustrated and sick of being bothered.

Joel came through his surgery just fine. I checked on him when I left Kevin tonight (he is in the next room now) and he was sleeping so peacefully.

If nobody minds, I am just going to answer some of your questions because there really just isn't much to say.

First, Lisa - No, Kevin doesn't shake his head or truly give any indication that he understands when you ask a question. That's one reason I am just not sure that he really chose the word YES yesterday on the board. I want to believe he knows, but in all honesty - he just may not. As for his neck muscles, he actually sat in the chair for almost 2 hours today with no neck brace. This was the first time we didn't use it while he was sitting up. And him using his eyes to blink for yes or no - that's not easy for him to do. His eyes don't shut, not even when he sleeps. They were badly burned and although he has already had plastic surgery on them twice, he will need a few more surgeries before we are all done.

Jenna - thank you so much for asking if I need anything from home. I really don't though. I live in a hotel room so space is limited and since we will be leaving soon I try not to add anything to my stash as I will have to pay to have everything shipped to Tampa when we leave.

Karl - we have a few pictures here that we show Kevin and to be honest - lately he has been getting very upset when we show them to him. I don't know if it means he remembers and misses his old lifestyle or if he doesn't remember who anybody is and is frustrated. That's a good idea though, writing the names on the board and asking Kev who is who. I will try that soon!

I think I got all of the questions answered. If I missed anything, please ask again. My inbox is huge and I try to keep all the questions there until they are answered. (I get all comments emailed to me).

Oh, and I was told I probably wouldn't hear before Monday about Tampa's acceptance. Man, I hate the waiting...

Wednesday, August 20, 2008

Day 81 - Aug 20, 2008

Today was a pretty good day for the most part. Kevin was put into the chair and we went outside for quite a while today. It was getting ready to storm so it was much cooler out and the breeze was really blowing. Maritza and Jose sat out there with us and it was just a nice half hour or so.

We then went in and sat in front of the windows again and we decided to call my parents. Well...that was rough. Everybody happened to be at their place having a family dinner and it made it all the more horrible that we can't be there - and won't be for a very long time. But the worst part was when Kevin heard their voices (and especially my nephews Michael and Scott). He got a very upset look on his face and started swatting the phone away. Me and Breezy both just broke down and started crying. We had to walk away and hang up the phone and get back under control. I just wish I knew what Kevin was thinking. Did he not know what the phone was? Did he recognize their voices and miss them? Did he realize he can't talk and was upset? What? What the hell is he thinking? God, I hate this part! The not knowing is just going to kill me, I swear.

(Many, many tears where shed between these two paragraphs as it is just so incredibly hard not knowing. And I really miss my family and my friends.)

That was pretty much the only bad part of the day though. For the good parts, Kevin was much more alert today and for a longer period of time. He really seems to need the stimulation of sitting in the chair and going for a ride around the 4th floor. We also used the dry erase board quite a bit and I believe we got some answers out of him today. I put YES in the upper left corner and NO in the lower right. I asked him three questions and had him point to YES or No for the answer. He pointed to YES each time. Now it could have been a fluke, but we will see for sure tomorrow.

One of the questions I did ask was if he knew I was his mother. I sure hope he meant the yes. I also asked if he knew Breezy was his sister and then if he remembered hearing Gram and Pap on the phone. All three were yes answers. I tried another question, but he was done. No more using the board.

I want to thank everyone too, for their suggestions. There are so many things y'all mentioned that I hadn't thought of yet. Some I did - like trying to contact Tampa to find out things I should be doing as opposed to things I shouldn't. I don't want to start a bad habit just by not being aware of proper procedure, kwim? And I did go buy some toddler games (blue and red ball with shapes) and Kev was really mad when I showed them to him. I am thinking this means he was offended that I bought baby games, but again - I have no idea what it really means and I am just guessing. I did tell him that I would throw them away as soon as he showed me he could do them, but he was having no part of it. None!

As for the game of Memory, my friend Kristen and her son Travis (Hi Travis!!) sent me a game a while ago to play with Kevin. I will take it over tomorrow. Thanks so much, Ida, for jogging my memory (no pun intended, lol).

Holee, I will have to get back to you for sure on what parts of the brain were removed and damaged. I do know they told me the speech part and motor skills were removed, but not sure about much else. I will say that he appears to 'mouth' words, but no sound comes out. Now from what I read on the web, the part of the brain that handles speech is actually the part that gives the ability to form words. I am not sure about this, but if he is mouthing the words - then he is already forming them. I could be so wrong about all of this though.

Brenda, I will check into those puzzles. Good idea. I will also see if we are allowed to film his rehab. The hospital we are in now does not allow any photos to be taken (but I just asked last week if they would reconsider this). I see their point, sorta. I don't feel just anybody should be able to walk in and take a picture, but if a parent is there every single day - they should be able to take a picture of their son hugging their daughter. Absentee parents - No. But if someone has their child's best interest at heart, no matter what the cost - it's apparent that they would show dignity and respect with their photo opportunities.

I also like the idea of the magnetic letters and Wendy mentioned the ping pong paddles. Cool ideas.

Ok, I have written way too much, lol. I want to quickly ask everyone to keep Joel (Maritza and Jose's son) in their thoughts tomorrow. He is getting his shunt put in. His situation is so similar to Kevin's...

Tuesday, August 19, 2008

Day 80 - Aug 19, 2008

I am writing very early tonight because I came home for dinner instead of going out so I have an extra few minutes before going back over to the hospital.

Today I went and bought a dry erase board for Kevin. For the first time in days, he had a spark of interest in his eyes and he hasn't been pushing us away. I am quite sure now that he is bored shitless. Anyway, he really liked the board. He scribbled a few things on it for about an hour (no words yet) and I just let him go. It takes him a while to hold the small markers so I am going to go back to the store tomorrow and buy some larger ones. Tonight I am going to see if he wants to use it some more and I am going to pay attention to the colors he uses. I want to see if he writes with all the colors or just certain ones. I just didn't think of it earlier because I was so excited that he could even hold the marker to the board.

And I know he needs to learn how to write with his left hand now and that is going to take some time. I told him that I would learn with him because I can't do it either. This way I will know exactly what he is going through and we can have two angry, frustrated people, lol.

So wish us luck yet on getting him to really use the board. I tried some questions tonight and wrote yes and no on the board and told him to pick the answer, but he wasn't doing it. I am going to work on that if he is still awake. If not, there's always tomorrow, right?

Monday, August 18, 2008

Day 79 - Aug 18, 2008

We didn't hear anything from Tampa due to the tropical storm issue going on over there (bummer!), but they did tell us that they will get back to us within a few days. Nothing much else happened today so I am going to make this a super short post. I will write more tomorrow evening. I am just too tired to do much else tonight.

Sunday, August 17, 2008

Day 78 - Aug 17, 2008

Kevin sat in the chair almost 5 hours today and 30 minutes of it was spent outside in the courtyard. I wasn't there - Breezy was, but she was telling me that every time a breeze came along Kevin would pull his hospital gown down so his chest was bare and he would let out this long sigh. Apparently he loves the breezes! It was much cooler here today (only 89, lol) so he stayed out longer.

We also have not had to restrain Kevin's hand for almost 2 full days/nights. He is getting better about not doing things he isn't supposed to do. Maybe we won't ever have to restrain him again - wouldn't that be nice!

To be honest, he is getting better with everything. The left side of his head is about a quarter of what it used to be. I believe the reduction in cranial pressure is leading him to be able to do/understand more. We have even noticed some slight movements on his right side. Today I touched his foot and he jerked away like it tickled. This is just super! Any sensation is great - now hopefully it can be rehabilitated. I know if it's possible, Kevin will be able to do it. He always was very athletic (extreme sports mostly) and very determined.

He still doesn't talk though. Matter of fact, since the "Smoke on the Water" thing - he hasn't made a peep.

So hopefully tomorrow we hear from Tampa. I know Kev's doc came back from there yesterday and stopped in to tell me that they are pumped to start working with Kevin. Yes - it's a definite that we are going, we just don't have the 'official' word yet. Can't start the medevac flight plans until we are formally accepted. So keep those fingers crossed, folks!

Day 77 - Aug 16, 2008

We got to go outside today!! Yes - we made it for about 20 mins and we were all just soaked with sweat so we came back into the air conditioning and put him in front of a huge expanse of windows for another 15 minutes or so and then we went back to our room. We made it to 2 1/4 hours in the chair today. YAY!! He did seem a little bit excited to be wheeled around the hospital in the chair, and his eyes were really wide when we went out into the courtyard. He mostly just looked up at the sky and the treetops.

Nothing much else really happened today so I am going to cut this one short. I had to run to Wal-Mart because I bumped and dumped a whole glass of Pepsi into my purse and had to buy a new one. Yep - had about an inch of soda and many ice cubes just laying there. Grrrr.... So I am running late tonight and just want to go to bed.

Looks like Kevin comes by his grumpiness honestly, eh? LOL!

Friday, August 15, 2008

Day 76 - Aug 15, 2008

Kevin was in a grumpy mood again today and he wouldn't play any games or really even acknowledge us. He did get into the chair again today and we made it close to 2 hours this time. You can always tell when he gets tired because he fidgets so once he started that, we took him back to bed. We also faced him so that he could look out the window today and he was enthralled! Matter of fact, if someone stepped in front of the window, he would move his head until he could see the view. I'm not sure if he will be put in the chair over the weekend, but if he is we are going to try to take him outside. The nurse and I discussed it and he can stay in the shade for no more than half an hour. Unfortunately, it's so hot here that I don't think any of us will make it a half hour, lol.

One thing Kevin did do today was roll over onto his right side and curl up into the fetal position and he held it for about 3-4 minutes before rolling back over onto his back. I was very proud of him because it wasn't as hard this time as it has been. He has come so far, hasn't he?

We also got a visitor both last night and today. Capt Jeremy R and his wife, Dana, came in for a couple of days. A whole bunch of us even went to dinner tonight and it was really nice. These two are just wonderful people!

And unfortunately, I didn't hear from my case worker today about Tampa's acceptance. We kept missing each other. I guess it will have to wait until Monday now...

Thursday, August 14, 2008

Day 75 - Aug 14, 2008

Yay! Kevin got to sit in the chair today!! At first they weren't going to do it, but I stayed strong, talked to the doctors and plead my case (yet again!). We left him in it for over an hour and I was so happy to see that he was even able to hold his head up for most of that time. And none of his numbers went up (heart rate, blood pressure, respirations etc) so he handled it really well!

And to top it all off - when we pulled Connect 4 in front of him, he picked up the first checker and went straight to the top to drop it down in the slot instead of into the hole like he did last night! It was almost like he thought about it all night and remembered! But - he couldn't actually get any to drop in because the checker would be off by a fraction of an inch so he eventually got frustrated and quit.

Phew! Frankly, all of this was just exhausting. It took 45 minutes to get him into the chair. He has to be unplugged from everything, transferred to the chair, situated just right, strapped in using 6 heavy straps and then all plugged back in. Let me tell ya - I will never take for granted the ease with which I can plop my butt into a chair!

And...because of the Connect 4 issue - my case worker contacted Tampa and hopefully tomorrow we will be accepted into the program. Once that's done - we start the paperwork on transporting him (and us) to Florida. Keep your fingers crossed for tomorrow's news! We are so ready to go...

Day 74 - Aug 13, 2008

We saw something so great tonight! I went and bought Kevin a couple of games and one of them is Connect Four. Well, Kevin is able to pick up the checker and although he doesn't comprehend having to put the checker in the top for it to fall down the column, he does understand in which spot it should go. He will hold the checker over an empty spot, thinking that it will just fit in the hole! It was so exciting! This is purposeful movement for sure and it shows some brain power and it also shows he definitely can see out of his left eye at least. I mean, yes he has always acted like he could see, but we didn't know if it was blurry or anything and this goes to show that it can't be. To be able to distinguish filled and empty slots is amazing! And to be able to put your hand that is holding a checker up to the empty spot in a row and hold the checker in place for a few seconds is amazing! Heck, sometimes he even dropped a checker and he would know right where it landed on the bed - even if it rolled from where it fell. He was always able to just grab it and try again. It was so awesome to see!

I bought these games out desperation. To be honest, for the last couple of days I have felt that Kevin is just bored and frustrated and depressed. He has been more inactive and quiet than normal and he is always pushing us away. I think that these are signs of depression and frustration. I can't imagine sitting in a hospital room for nearly 3 months and not being depressed. And bored for sure! So I bought a few games to give them a whirl. I am going to go back to the store tomorrow and see if they still make the game of Perfection. I think that's what it is called - where there are different shapes and you have to put them into the correct holes? If anyone has any suggestions of games or different items that can be used for brain stimulation - shoot them at me! I am always open to suggestions!

And tomorrow we will find out if we can put him in the chair. The doctors are going to discuss it while on rounds in the morning and make a decision. I so hope so! I see him getting physically and mentally stronger every day and we need to keep going forward before he starts sliding backward due to inactivity.

And believe it or not - I went to the movies tonight! There was a 10:30 showing of Mamma Mia so about 8 of us went after visiting hours. I liked it. But I could definitely tell Breezy hated it, lol. It was nice to do something 'normal' though! Maybe I will go again next week...

Tuesday, August 12, 2008

Day 73 - Aug 12, 2008

We got a huge shock when we went into Kevin's room today. His head was actually indented by about 2 inches on the top left. The shunt is obviously working, but the docs didn't realize it would work so fast. Now he still has the very large sac of CSF coming out of the side of his head, but it's come down so far that it is no longer swollen at the top. I know it's a good thing, I really do. But I have never seen someone that had part of their skull removed. It's scary to see an indent where your skull should be. And I would hazard a guess that this makes the brain even more susceptible to injury than with the sac of CSF. But it's progress, right? I just have to keep thinking about that. Progress.

And today Kevin was trying to pull himself into a sitting position again. This time he could see the bed rail on the right side so he was using his left arm to try to grab it. He tried numerous times today, but couldn't reach it. He would even grab the plastic sheet and try to pull himself closer, but it was too hard with his right side not moving at all. But - he finally managed to do it tonight! And I, of course, missed it! I was talking to the nurse and not facing him - darnit! But Breezy got to watch it and I think it made her night! Yay for Kevin!

So I am hoping tomorrow maybe we can sit him in the chair again for a half hour or so. Now that his head isn't so heavy, maybe it will work. And maybe if we get him in the chair, we can take him for a ride around the hallway. I think it would do him wonders to get out of that room! Maybe even into the courtyard for a few seconds or so. He can't really be in the sunlight due to his burns, but a minute or two can't hurt. I am probably pushing it, but it would just do us all some good.

That pretty much was all for today so let me get to some questions. Grant, I know you want pics of the parade posted, but I don't have any. Breezy was videotaping it (not taking pictures), but she was crying so hard that it makes you sick to watch it because she couldn't hold still. If anyone else has some pics, we would love to see them. Just let Moe know at the grocery store in EB.

And someone asked about his coma level and speech pathology: His level is still in the 10/11 (or was it 9/10?) range. And SP has not been involved yet - that's one of the steps in Tampa, which is why we really need to get there. This hospital is well equipped for the burn patients and amputees. But they are not equipped to rehab TBI (traumatic brain injury) patients. And to be honest, we are just spinning our wheels here in regards to this. He has no form of rehabilitation to stimulate his brain. But we needed the shunt and the feeding tube before we could go, so hopefully within the next few weeks we can head out.

That's it for questions tonight - at least from the readers. But I have one. Has anyone read the Twilight series? I picked up the first book tonight to read to Kevin, but I am not sure if it's something he would like or even if it's appropriate. It seems to be all the rage right now as the fourth book just came out. Anybody have any input? Is it gruesome? (if so I won't read it as I am a big baby) Or is it a romance? It's about vampires, but it's too hard to get a feel for the book from reading the synopsis. Any input is appreciated.

Oh - and someone mentioned me missing a day. You actually need to go by the title of each post and not by the date it was posted. Sometimes I don't start typing until after midnight and that causes it to show the following day's date. (but hey - we all know that I sometimes can put the wrong date, lol. Hello...2004?)

Day 72 - Aug 11, 2008

This is going to be a short post tonight. Kevin was pretty much the same as yesterday so I am just going to pass on writing too much.

I do want to quickly thank Kevin's Platoon Leader, LT Justin G, for being here the past few days. He has stayed with Kevin for hours a day and it was a big help to both Breezy and myself. And I am pretty sure that Kevin appreciated the different topics of conversation! It just amazes me how the 173rd steps in to help their fellow brothers.

And speaking of brothers, my own was here a couple of weeks ago and he has been a great comfort to me. I can honestly say that I have talked to him more in the past 3 months than I have in probably the past 3 years! Things like this have a way of making people closer, don't they?

Oh - and someone asked if Kevin went to Butler HS and the answer is "no". He went to Karns City. We lived in East Brady most of his life.

Sunday, August 10, 2008

Day 71 - Aug 10, 2008

Kevin was more awake today. He got some pain medication at about noon and then didn't seem to need anymore until almost 10pm tonight. Breezy and I noticed today too, that he seems to be feeling a little bit more on his right side. She tickled his foot and toes today and he moved his toes. He also rubbed his right eye a couple of times and just kept scratching that side of his face all day. I can only hope that he is starting to feel that side because it may mean that he will at least have some functionality.

And this might have been a coincidence, but we were watching School of Rock tonight and they were playing Smoke on the Water and I swear Kevin was trying to make the intro sounds to that song. You know...the doh doh dohh, doh doh dadoh (I sure hope y'all get what I am trying to say here, lol). He didn't really say the noise, but you could hear some sound coming out in the right beat for it. Who knows for sure, but I really think that he was trying to hum along.

That about sums up our day. We just watched some of the Olympics and then some movies. I had a couple of questions so I will get to them:

To Linda from Ford City: I purchased a CD player for Kevin the first week he was here. The problem is that his choice of music is heavy metal and the nurses (and I) just can't handle it. We try to listen on occasion - but it's not often. Besides that, I wouldn't really know what heavy metal songs/bands he likes. I did buy him some Tom Petty and Moe made him a CD of some of his favs and we do listen to those often. As to the Metal stuff - I bought Atreyu and Disturbed and Drowning Pool. If anyone knows of anything that he really does like for sure - please let me know. Oh - and I bought him an Adam Sandler CD, but every other word is the "F" word so we can't really listen to that either.

To the EB Military Guys: Y'all wanted to know when we might come home and roughly what our schedule will be like. First, I want to say that it's really not able to be determined yet, but with that being said, we have been told his total recovery period will be between 2-5 years. Yes, you read it right. 2-5 YEARS. I know of one person who had a similar situation to Kevin and he has been between here and Tampa for 4 1/2 years now. He is nearly complete with his recovery.

I was told today that we may be leaving within the next 2-3 weeks for Tampa (barring any infections) and we will come back here for his cranioplasty instead of Walter Reed like I had thought. This is my choice as I have researched where I feel that we will have the best results and where we will feel safest. Please understand that I am not putting WR down, but have been told that the area around WR in Wash DC is not as safe as I would like. I know that both this hospital and WR are well versed in cranioplasties so I am confident that we will do fine here. Anyway, we will go to Tampa until Kevin is ready for the cranioplasty. He needs to be infection free for 6 months before we can have the titanium plate put in his head and this means that if Kev is fine for 5 1/2 months and gets sick - we start all over again. So on the off chance that Kev gets no infections, we will come back here in about 5 months for the surgery. We will recover here and then possibly (probably if it's that soon) go back to Tampa and then back here to San Antonio for further burn rehab. Of course, this could all be totally wrong. There is just no way to plan for anything in the future here. Too much can happen at the drop of a hat.

Any other questions? Throw them at me. Sometimes they jog my memory and it reminds me of something I forgot to mention.

Saturday, August 9, 2008

Day 70 - Aug 9, 2008

Kevin slept all day today. I was there from 12-6 and I think he was awake maybe 10 minutes. I went back at 8:00 but left after an hour because he didn't stir at all. He is on pain killers so he probably won't wake back up until about midnight. I will call over then and make sure he is ok.

I want to quickly write that if anyone has any questions - please post them in a comment. I will try to answer the next night, but if I don't - ask again. Sometimes I am not too swift and forget, lol.

Also, if you are unsure of how to post a comment, just click on the word "comments" at the bottom of every post and you will be able to do so on the right side of the screen.

That's really about it for today. Oh - some of you have asked about Alan...he called Breezy at 4am today and is doing fine.

Now I am going to cut this short tonight and finish watching a movie that I started last night. Sometimes it takes me 3 nights to watch one because I fall asleep. I just hit pause and turn the tv off until the next night. Goodnight, everyone!

Friday, August 8, 2008

Day 69 - Aug 8, 2008

Hurray! The surgery went very well! The shunt is in place and typically when a shunt is put into a head it will start dripping immediately - well, Kevin's started FLOWING immediately! There was so much pressure in his head! The docs told me that it would take months for the swelling to go down, but we can already see a difference. I expect it will slow down, but technology amazing! I can't even begin to believe that my son has a dial implanted in his head that can be turned to whatever pressure point it needs to be turned to. Now we just need to keep our fingers crossed that it doesn't falter and that no infections show up. We really need this to go smoothly.

I will say that although we are ecstatic at the surgery going well, I have never seen Kevin in so much pain. And I do mean NEVER. He very rarely is given any form of pain medication, but today I actually heard and saw my son crying while still under the influence of morphine. It was so pitiful. He was literally sobbing and it completely broke my heart. What I wouldn't have done to trade places with him today (and every other day). We have kept him heavily doped up though, so he wasn't awake at all. Not really awake anyway. I sure hope the pain is less tomorrow. Please let it be less...

To answer Kevin G's question about how Kevin's burns are healing - he is truthfully healing way better than most burn victims. We have been here 2 1/2 months and the burn docs tell us his burns look 6 months old already. I will admit though that I was saddened today. If I know this correctly - we keep his burned areas wrapped tightly in ace bandages to keep the burns from tattooing (turning purple and red). Kevin's legs have already begun turning back to his normal skin tone in some areas. But today we couldn't wrap them due to his surgery and when they took the gauze wrappings off (instead of the ace bandages) his one leg was very purple and blotchy. I am so hoping that this can go away as quickly as it has come, but I thought I heard one time that once it's there - it's there. I might be wrong on this though as it is just a buildup of blood under the burns. Maybe if they put the ace on tomorrow it will go back to normal.

Kevin also wanted to know if Kev can feel his right side - that we just don't know. Because he can't speak - we don't know much of anything.

To answer Monica's question - SSG W came back unexpectedly to visit and so did Josh B (who rode in the ambulance with Kevin when it happened) and another guy who's last name starts with E was with him. We also had a Fransisco come and today LT (I think he's a LT) G arrived. He will be here for a few days and he stayed in Kevin's room with me for hours today. I have to say - all of these guys have been just wonderful! It's nice getting to know Kevin's extended family.

Well, I am off to bed. It was an early day today.

Thursday, August 7, 2008

Day 68 - Aug 7, 2008

I honestly think that Kevin somehow knows when I have hit my lowest point and he does something to give me hope. I will admit that that has been my problem the last few days - I had lost hope. It's very hard to always stand next to Kevin's bed with him just laying there. He doesn't do anything - just looks at you every now and then, but mostly just looks straight ahead with a vacant look. Very rarely do we get any kind of facial expression and so often I just feel like he is never going to come back to us. I can usually go home and talk myself into feeling good, but after days and days of no sign from Kevin that he's in there - I do start to lose that sense of hope.

But today he did something. I think I mentioned about those large clothespins used for rehab - well today the occupational therapist and I clipped all 5 of them onto his gown. We asked him to unclip them and put them into the bowl at his side (and then put them back onto his stomach). HE DID IT! And not only once - but 4 times. It was so funny because the 3rd time I asked him to put the things from the bowl onto his belly and he let out this agitated sigh and started slamming his hand into the bowl, and slamming the clips onto his stomach and then slamming his hand in the bowl again and so on. He was so mad! I could almost hear him say "why in the hell do you keep making me do this stupid stuff?!!" I positively loved it!

That was all I needed. I haven't cried all day today.

And we are still on for the surgery first thing in the morning. I have to be at the hospital at 6am for a last visit before they take him at 6:30. Please keep us in your thoughts tomorrow!

With that, I am going to head to bed early tonight. I will let y'all know how it goes tomorrow!

Day 67 - Aug 6, 2008

I do believe I have become a blubbering mess. I just can't seem to stop crying. Every time someone looks at me - I cry. Every time I think of Kevin - I cry. Every time I open mail - I cry. Even when I talk on the phone - I cry (poor Moe and my parents). I guess I have hit that place where I need to step up and 'see someone'. I really thought I was doing pretty well. Not sure what has happened, but I was apparently mistaken. I have already discussed this with my case manager and she is setting up an appt for me. Don't worry everyone - I am really trying to take care of myself. This, I guess, is just another step in the grieving process. And I am told that even though Kevin is alive - we will still grieve because we did lose the person we sent off to Basic Training and we all three lost our lives as we knew them.

So Kev is doing better when it comes to the temp. He is back down in the 101-102 range, which is normal for both burn and neuro patients. Also to answer a question from my friend Diana so that everyone understands - From what I gather, a neuro patient's internal temperatures is sometimes altered when there is brain damage of any sort. It is true of normal patients that a fever usually means an infection of some sort, but a neuro patient's temp may never be 'normal' again. I wish I could explain why, but I just don't know enough about it yet.

He has also slept a little bit through the day today. I am thinking that he will probably sleep more tomorrow as it seems to have to do with how much CSF is built up around his brain. We measured him yesterday in inches and his head is 25 inches around at the biggest point. I can't wait for Friday. I sure hope we have the surgery and I can only hope this shunt works well for us. I have heard (and read) numerous times about how they can falter. But I know what to look for if it does, so all should be ok (does that sound positive enough?).

We did have a couple of visitors today from Kevin's unit. I tried my best to prepare them, but it was very sad to see how it was for them. I know they were both there when it happened, so I can only hope that they take care of themselves. It can't be easy seeing something like this. I also wished I had gotten to really sit down and talk to them, but I didn't want to leave Kevin alone during visiting hours. Breezy did, though. They talked for a good hour or more and it seemed to have helped her feel better.

Not too much else happened today, but I do want to take another moment and thank two very famous people. First - to Tony Hawk for sending Kevin a great autographed picture. I truly hope the day comes where he remembers what you meant to him.

Second - today I got the mail and was shocked to see a large envelope from none other than David Baldacci (one of my absolute favorite authors!!) I think I just held the envelope for a couple of minutes in awe. I did finally open it and out came a copy of his newest book "The Whole Truth" (which I haven't even read yet!) and he even signed it with a personal note to me! Now this might come as a shock to y'all - but I cried! I just can't imagine how somebody like him would even know about a person like me. Amazing! Thanks so much, Mr. Baldacci!!

Geez. I have pretty much written a book myself tonight...

Wednesday, August 6, 2008

Day 66 - Aug 5, 2008

Not too much happened today so I am going to take the night off from writing. Kev was tapped this afternoon and they did take out 220 CCs of fluid, but that's about it. We are anticipating surgery on Friday and it will only be canceled if any form of bacteria shows up in his cultures from yesterday.

I will talk more tomorrow night. Tonight I am just emotionally exhausted. For some reason I have been crying all day today and just need to take a little break tonight.

Monday, August 4, 2008

Day 65 - Aug 4, 2008

Didn't anybody notice that I put Aug 3, 2004 in the title last night? Why didn't y'all tell me that I was an idiot? LOL!!

So we won't be having surgery tomorrow after all. We were supposed to have the shunt put in Kevin's head. Unfortunately, Kevin spiked a temp of 105 twice last night and once again today. Damn! We have had no infections for somewhere around 5 weeks now and we were so close to getting this done and heading to Tampa! Now we need him to have no fever for a 24 hour period before they will operate. We have it on the schedule for Thurs, just in case all is well, but I am not holding my breath. We don't know what is causing it yet so we can't administer any antibiotics at this point either. This might explain his mood yesterday too. Maybe he just was not feeling well.

For those that are unaware of what a shunt is - (I hope I get this right) it's basically a tube that is inserted into the head and it is run right under the skin down the head, neck and chest into his abdomen. This will allow the CSF to drain down that tube to the abdomen and be reabsorbed into the system. It may only be a temporary thing, but it may be permanent. Only time will tell.

That just about sums up our day. Breezy and I just took 1 1/2 hour turns in his room today and then we went to dinner with Maritza and Jose. Maritza and I, as well as Joel and Kevin will all be on the same plane to Tampa. Jose and Breezy will probably fly to Tampa together on a commercial flight. As I mentioned before, we all become very close here - like family. They have pretty much adopted Breezy and it will be really nice to go to Tampa with someone to share the 'figuring it all out' part of the trip. I sure hope it's soon. I know we all want to get there so badly!

Sunday, August 3, 2008

Day 64 - Aug 3, 2004

Kevin was kinda grumpy today - he was very restless and thrashing all over the place and I just don't know what was going on. It's so incredibly hard not knowing what he is thinking and feeling. I don't know whether to back off and leave him alone, or console him or move him because he could be uncomfortable or what. I just don't know. And I think that is probably the hardest thing to deal with. I don't know what he needs or wants. I don't know if he knows what he needs or wants. I don't know if he is 3 years old and wants cartoons on or if he is 20 years old and wants Beerfest on. It sucks because I just don't know whether to talk to him like he is a child or tell him to buck up and be a soldier/man. I just don't know. I just wish he could speak and tell us what he wants. I would do anything for that! But I guess that's not meant to be - at least not yet.

I did get him to calm down for about a half hour today while I read some more Harry Potter to him. We are about finished with the first book so I am going to run to Wal-Mart as soon as I am finished blogging and buy the second. I wish I could've read to him all day, but it makes me so sleepy. I have to stop and get up and move around or next thing you know, I will be snoozing.

So Alan (Breezy's boyfriend) left today for Iraq. Breezy is pretty emotional right now. He actually came here over the weekend to see Kev (and me) and say goodbye to Breezy. I wasn't real keen on him coming here, not because I didn't want him around - but because I don't think anyone heading downrange needs to come here and see what this is like. But it's over and done with and he is on his way to Iraq via Ireland as I type so let's all keep him and all of our men and women in the military in our thoughts.

Off to Wal-Mart I go...

Day 63 - Aug 2, 2008

When I got in to see Kev this afternoon, I lucked out and the neurosurgeon was there. We talked for a bit and he decided not to tap Kev's head. I begged to differ and after presenting my case, he did do the deed and you will not believe how much CSF (cerebral spinal fluid) that he drained from Kevin's head:

570 CCs!!!

That is more than a quarter of a 2 liter bottle of Pepsi! Can you just imagine?! And I am happy to say that Kevin is moving around again and he was awake all afternoon and evening. Yay, Kevin!! (and for a little while Kevin's head was the smallest it had been since we arrived - but it is already growing again)

We also had a surprise visit today from Staff Sgt W, who was with Kevin when the incident occurred. He is a very nice gentleman and when he went in to visit Kevin, Kev just stared at him the whole time he talked. I can't say for sure what Kevin understood and what he didn't, but he appeared to know. And Staff Sgt W had Kevin blink a couple of times to answer a question and Kevin did it. Of course, this could all be coincidence, but I'm gonna run with it (like always, lol). I will say that I stepped away from the bed while Sgt W was in the room to give them some privacy, so I have no idea what was said, but hopefully Kevin did understand.

I went today and bought a crock pot and an electric skillet. I am sooo tired of eating out. I have been holding off purchasing things like this because I knew we were going to Tampa soon and we can't take them with us, but now it will be weeks and if I have to eat at Olive Garden one more time - I am gonna scream! So now I can at least cook some things and can't wait to have a hot dog in sauerkraut. Or scrambled eggs or one of those skillet sensations...

Man...I am so hungry!

Friday, August 1, 2008

Day 62 - Aug 1, 2008

I am a little bit worried today because Kevin is back to sleeping all day again. I don't want to say that he is back in his coma, but he barely moves and only opens his eyes for maybe 10-15 mins all day. This has been for 2-3 days now. Now I know that he just had surgery and I know he had an MRI yesterday, but still...I just think something is wrong. I am hoping that they will tap him again tomorrow and maybe that will make the difference.

They did put him in a chair today. It's kinda like a bed that works itself into a chair and I was concerned about it from the getgo because you typically have to wear a helmet when you have no skull covering part of your brain and are out of bed. But they put him in it and luckily, they realized rather quickly that he just can't do it. It was supposed to be for 4 hours and I don't think he was even in it 15 minutes. His neck muscles are too weak to hold up the left side of his head because it is so large. I say get that shunt in, let some of the fluid drain off and maybe his head size will be reduced enough to make a difference. But that's my take on it and I am not a doctor so who knows.

We also found out today that Kevin has some new bone growth. I guess it's common in burn victims because their calcium levels are much higher while healing and mostly it just flows throughout the body. Unfortunately, Kev has calcium that is depositing in at least one area and bone is growing on top of bone. It's not a good thing and it can be painful, so an anti-inflammatory medication was given to him today to keep the muscles from being inflamed around the new bone growth. This is happening in his upper right leg and we caught it because of all the pain he would be in when moving that right leg to the center of the bed. It's just horrible to see him grimacing and turning red from it hurting so much.

And Kevin's right arm has been curling inward lately with a lot of tension (mistaken for strength). I was worried because he was only moving it in and never outward and it appears that this is spasticity (sp) or major muscle spasms, like charlie horses. He can't help it and I know how painful those can be, but he has been handling it well for the most part. We are now trying to pull the arm back down next to his side so that it doesn't 'get stuck' curled up on his chest toward his throat. Not an easy feat because the spasms don't allow you to move the part of the body that is affected and you definitely don't want to force it. So when he relaxes, we just put it back to his side.

Truthfully, this really wasn't one of our better days. I did get all of my emails back (thank goodness!), but Kevin didn't have a great day. Maybe tomorrow will be better...