Day 61 - July 31, 2008

This is going to be an incredibly short post as nothing at all really happened today. Kevin had an MRI done this morning and he was sedated for it, so he literally slept all day today. From 10am this morning and I just left at 10:30pm and he is still sawing logs.

I was also told it will be weeks before we head to Tampa now. Of course, this could change as well, but it sounds right due to the shunt needing put in. We will have more info on that as soon as neurosurgery has a plan of action.

So that's it. Now I think I will watch that sad movie that I passed on the other night.

Oh and I am editing this post to add a picture of Kevin taken by Josh (and sent to me from his mom Debbie - thanks Deb!) of Kev in Afghanistan. I had more - but I believe the webmail server crashed and all of my messages are gone. I will wait until tomorrow to panic...

Day 60 - July 30, 2008

Kev had the new feeding tube put in place late this afternoon! It was supposed to be a relatively quick and simple surgery but it turns out that he has so much scar tissue that it took over 3 hours to complete. It was so wonderful to see his face with no tube coming out of his nose! Now if we can just get rid of these goggles (and it will be a LONG time before that happens - months I believe) we will be truckin' right along.

So it's looking good for the VA acceptance. This new tube was a stipulation before they would accept us, so hopefully we will hear something soon.

I was also told today that they have pretty much decided to put a shunt in. They can't wait 6 months because they can't keep tapping him so they are going to do an MRI tomorrow and come up with a plan of action with areas that weren't burned.

So today I looked really long and hard at Kevin's eyes. The lids were the most burned part of his face (which makes sense as they are so thin). I truly am amazed at how fantastic his top lids look. I'm not really sure that you can tell that they are grafted. The skin is nearly smooth and the color is a near perfect match. Once the stitches wear off and he doesn't have to have so much lubrication put in and on his eyes, he may look completely natural. Now the bottoms are still healing and the skin is still raised up and fleshy looking. But give it a couple of weeks and I just bet they look just as great. The plastic surgeon that did them really did a wonderful job! I know that we will need to probably have Kev's eyes grafted again, so hopefully we have the same surgeon.

And I guess I need to take a quick moment and clarify that yes - Kev is out of the coma. Breezy was telling me that when she was home some of you were unsure because I guess I didn't outright say it. My mistake. Probably because it wasn't said outright to me, but I am sorry.

So that's it. I am cold so I want to take a hot bath. I always turn the AC off in the room, but the cleaning lady turns it back on and it's always frigid in here when I come home at night. Brrr...

Day 59 - July 29, 2008

Well, for the most part the meeting went well. Unfortunately the neuro doc was in surgery and wasn't present, but I will catch up with him tomorrow.

Kevin has definitely improved in the last 12 hours. I was overjoyed at how well he is starting to obey some commands. I also watched something amazing from him today. He was given a large plastic clothespin that is used for rehab (different colors have different tension levels for squeezing). Anyway, when the nurse put it in his hand it was upside down. Kev flicked his wrist upward and it kinda flipped in the air about 6 inches and Kev caught it on the way down and it was turned the correct way and he gave it a couple of good squeezes. I swear he knew exactly what he was doing! And it was all without being able to see it because his hand is down at his side and his head is usually facing upward while laying in bed. His left hand movements are no longer tentative. They are direct, without any hesitation. Mind you, he still doesn't seem to always know what he is doing, but we are getting there and I am realistic enough to know that that is going to require lots of rehab.

I personally think he has such good coordination with that hand because of all those hours on that XBox 360, lol. (I can just see all of his friends - including Sgt G, haha - nodding at this)

So I was told in passing that Kev may be going in for surgery in the morning to put that PEG in. I sure hope so. We can't be accepted to the Polytrauma Unit until it is and as you can see, Kev is ready for rehab. I was told that you have roughly one year from the date of an injury to work with the brain. Obviously I am going to ask that you don't quote me on this, but the rest of your body can take longer, it's only the brain that can't usually be rehabilitated after that length of time.

I was also told that Kev could have had the trach taken out a while ago, but because he will be flying to Tampa with a head injury, it is being left in place. Once we get there, it will be removed (barring any problems).

I think this about sums up the day. I am going to do something stupid and watch a tearjerker movie. No, maybe I won't. This has been the best day I have had in a week and I don't want to ruin it, lol. I guess I'll figure something out...

Day 58 - July 28, 2008

They tapped Kev's head again today and drew out 320 CCs of fluid. I am not sure why as I was under the impression that he was reabsorbing on his own, but I will find that out tomorrow.

I have a meeting in the morning with ALL of Kevin's doctors. We need to all be on the same page and we really just aren't. I just want to head to Tampa so we need to get the ball rolling.

On another note - Breezy's back! What a relief! I was trying to be a good mom and tell her that I think she should just go back home and continue with her life. I will be the first to say that no 24 year old should halt everything for this type of situation. But she won't hear anything of it and I am embarrassed to say that I am secretly glad. I would really miss her. BUT, I will say that I would totally understand if she did decide to go and would never be hurt by that choice. (But I'm still glad ;-) )

That about sums up the day. We got a few hugs and OH! - I forgot to say that they removed the bolsters from Kevin's eyes today so we got to see those beautiful greens. He has to mainly leave his goggles on, but we lifted them for about 15 mins today and his lower lids look great. He still sleeps with his eyes open but that's because the top lids are already pulling back up. We will be having quite a few eye surgeries over the next 4-6 months. That stinks, but we don't have a choice.

Well, I gotta get to bed because it's later than I normally post and I have to get up early again tomorrow. Goodnight, everyone.

Day 57 - July 27, 2008

Today has been another one of those days where nothing much happened. To be honest, Kevin slept an awful lot today - more than usual. I suppose he needs it.

So it was 8 weeks yesterday since the attack. It's still so hard to believe that it's only been that long. I was talking to a woman who's husband is here and I mentioned that I barely remember what my life was like before this event changed it all. We kinda laughed about it, but I suppose it's not really all that funny. We also wondered if it's possible to have a conversation about something other than the hospital, the nurses, surgeries, etc. I honestly feel like I just stepped into somebody else's world. I mean, one minute you are in one place and the next it's totally different. There's no slow change that you adapt to as you go along. It's just BAM! Right there!

Geez. I sure am bitching a lot lately. Sorry.

On a lighter note - I just want to take a quick moment and thank everybody for all the help. I don't want to miss anyone, so I am just going to make a broad statement (besides - it would take a year for me to mention everyone's name, lol). But seriously, thanks everyone! I (we) appreciate all of the benefits and the friends, family members and even strangers that have helped us out! We honestly couldn't do this without all of you.

And I sincerely hope that at some point in my life, I am able to help someone out in the same fashion.

Now as a last little parting tidbit of useless information: guess how many minutes I talked on my cell phone last month?

4946!!!

I can honestly say that I have never in my life talked on the phone as much as I have since coming here. That number is just ridiculous, lol!

Day 56 - July 26, 2008

I hate to do this, but I am really just too tired to post much tonight. I haven't slept for a couple of days now (I've tried - it's just not working) and it's all catching up to me.

Anyway, nothing really at all happened today. One good thing is that Kev's head has stayed the same size for days now so it appears that he is reabsorbing the fluid that is created daily. YAY!!

That's really about it. Which is why I am going to cut this incredibly short and just go to bed.

Sorry everyone!

Day 55 - July 25, 2008

Well, the PEG didn't get put in. Apparently, they tried to do it at the bedside but Kev has too much scar tissue and he is too thin (he's probably lost about 25 lbs - weight he really didn't have to lose because he was already thin) so they are going to have to do it next week in the operating room. I guess they have better equipment there.

Kev also somehow managed to get his hand loose again and pulled out his trach, his feeding tube and his dressings from his head this morning. This scares me because he just keeps getting loose and he is a danger to himself at this point. I just wish that the nurses could figure out a way to keep him restrained. They really are calling him Houdini now because he manages to get out of every restraint. I just can't wait to get to Tampa. I know they are better prepared for a situation such as this.

I have to say one thing - this is all so very exhausting. I really am just so tired. Physically and mentally. But I guess that's just too bad. I don't believe there are things like 'days off' when dealing with life so I better just suck it up and smile, right? Right.

Day 54 - July 24, 2008

This was a pretty uneventful day today (other than the rain from good old Dolly). Kevin seemed to be in a lot of pain from his back. It is still a bloody mess and I assume it's because he lays on it all day. You should see the poor guy try to lift his left side off the bed to alleviate some of the pain. It's so sad to watch.

We are having another (minor) surgery tomorrow too. They are going to put a PEG in, which is a different kind of feeding tube that goes through his belly into his stomach instead of down his nose. This is the last thing that needs fixed before we can go to Tampa. I am guesstimating about 2-3 weeks for us to be gone from here (could be wrong though).

We didn't get his head measured today, which kinda bothers me because it is supposed to be being done daily now, but I will make sure it's done tomorrow. I was actually pretty mad all evening because it wasn't done, but I am trying to be an understanding person. Not always an easy feat for me, (grimace). Patience was never one of my better virtues either...

So keep us in your thoughts for tomorrow's procedure as well. I am always so scared every time he has surgery. I just can't help thinking of how well Steve was doing and how he had surgery and passed away 2 days later. And I am not sure if any of you ever heard of Merlin German as well, but the same went for him. He went through close to 150 surgeries (over a 2 yr time span I think) and passed away a day or two after a minor little one to graft skin below his lower lip. Something so simple. I actually read a news article about Merlin about a month or so before Kevin's attack. I just cried and cried. I remembered at the time thinking what an amazing person he had been and how lucky I was that this hadn't happened to us. If I'd only known what was coming...

Read Merlin's story here.

Day 53 - July 23, 2008

The surgery went very well! I am hoping that some of the swelling will go down tomorrow and if it does - we may be able to see Kevin's eyes open because his upper lid can still go up. That is so exciting! I just hate not being able to see his eyes!

And I am very happy to say that Kevin's head was reduced in size by 2 centimeters! The docs are applying gentle pressure to his head in the hopes that between that and him sitting more upright, the fluid will start to reabsorb. I so hope so!

I also haven't heard any results from any of the cultures from the CSF and the fluid from his chest cavity, but he is still not on any antibiotics so I would say "so far, so good"!

We didn't get to see much of Kevin today because he slept on and off the bulk of the day due to the anesthesia. He needs his rest, so we let him have it.

Wouldn't it be just wonderful if everything all worked out?

Day 52 - July 22, 2008

What a long day today. It's not that the hours were any longer than usual, but the overall activities made it a very busy day.

Kevin did have 400 CCs of fluid drained from his chest cavity this morning. Although the fluid has been sent to the lab, the docs did say that the fluid was a great color and wasn't thick and milky like it would be if it were infected. This, of course, is no guarantee, but it does look promising.

He also had 200 CCs of fluid drained from his head. Hopefully it will start draining again on its own. They have him 'sitting up' in bed thinking that gravity may play a part, so we shall see.

Tim was also introduced and I quietly left the room for a little bit. Our case worker stayed during the visitation and she thought Kevin was trying to say something to Tim so they capped his trach, but he didn't say anything. If he is going to be able to, it is going to take him a while to learn to speak. It's a whole new process with this trach in. I can tell you this though - he does groan and moan a lot and I think that's a good start.

Kev was giving lots of hugs (like normal) to me tonight and at one point I had my head on his shoulder and he rolled his head over and laid it on mine. I told him I loved him and it almost sounded like he was trying to say it back. I am not sure about this though - it could have just been a moan, but still...

It sure is wonderful hearing any kind of noise coming from my son.

So once again, I will ask that everyone keep us in their thoughts tomorrow. Kev is having his lower lid release at 8am. This means that we won't see his eyes for a few days again. It's possible that he may be able to keep his upper lids open, but it's not a guarantee due to the swelling that typically follows this type of procedure. He will also have the bolsters (those mini sleeping bag thingies) attached to his under-eye area.

I wish this could have all been done before he woke up. Now it will be even worse cause he won't be able to see the tv or us or anything. And he will be more aware and possibly be more scared. And it's going to be awfully hard keeping that left hand from yanking one of those things off. I guess I am just going to have to accept that it's now - so buck up, Leslie.

Well, off to bed for me. Gotta get up real early tomorrow.

Day 51 - July 21, 2008

We had a couple of things that weren't good go on today.

First, Kevin's head is retaining the fluid again. The neuro docs have decided to just tap it and drain a good amount as it's needed. I am pretty sure that they will be doing that in the morning. To the best of their knowledge, they believe that Kev's head now has 'pockets' where the fluid will build up. It's a bad situation to be in because every time they tap it he runs the risk of infection. And every second that the ventric is in he runs the risk of infection (which is why it was removed a couple of days ago). And as I mentioned before, his skin is just not healthy enough for the shunt due to the burns. It will be months before that can be done. So we really don't know which way to turn on this at this point. I guess time is going to tell. I have to admit that this really scares me. I even started crying in front of the neurosurgeon. This whole CSF (cerebral spinal fluid) situation sometimes feels so hopeless.

Kev also has some fluid buildup between his lungs and the wall of his chest. The docs are going to do an ultrasound tomorrow and they will probably put in a drain to remove that fluid as well. Hopefully it's not an infection. I do know the fluid will be sent for a culture as soon as it's removed, so keep those fingers crossed.

Due to all of the activity today and his needing two procedures done in the morning, he was medicated pretty heavily this afternoon and we need to keep him free of stimulation throughout the night and tomorrow morning. That meant no visits. That was pretty hard. But I know he needs his rest and I sneaked in his room tonight and just took a look at him to make sure he was already sleeping. He was, so I just came home early and got a few phone calls in.

Now I think I am going to curl up with a good book. Gotta love David Baldacci!

Day 50 - July 20, 2008

Today was another good and bad day. To start with the bad - Kevin vomited all over the place today. It was the first time he has thrown up and it scared the heck out of me. We have no idea what caused it, but we have limited his tube feeds for the day. The poor guy. I know how it feels to be sick like that (don't we all) and I can't imagine how awful it is when you are in the condition that he is in.

As for the good things - the drain was removed from his head this morning and they also put a smaller trach in. I think they can go one step smaller again, but I was told that they may just remove the whole thing soon. I believe he is going in for his lower eyelid release this week, so it will probably be after that.

I wonder if we will be heading to Florida sooner than later?

I also talked to Breeze earlier today and she is sounding sad. I was kinda worried that this might be hard for her, especially for 11 days, but we will see. If she feels the need to come back early - she can. I will admit that I miss her terribly, but am trying to not pull the apron strings too tight, which is really hard right now - I just want both my babies nearby...

Day 49 - July 19, 2008

I lost another 20 years off my life tonight! Kev was given some morphine this afternoon and that always makes him sleep so Kim and I went over to the guest house and grabbed a movie to watch for tonight. So we went back over to the hospital within a half hour and when the nurse came to get me and I was walking to Kev's room I didn't see him in his bed (I can see 3/4 of his bed way before I get to his room). I asked where he was and she said "in his bed". I was like "no, he isn't" and by then we were both running to his room. Y'all will not believe this, but that kid somehow managed to pull himself into a sitting position and was leaning forward propped up against the left side of the bed (out of my view). The swollen part of his head was leaning against the bed rail and his body was falling forward. Now to the person that can say 'heart attack' in fifty different languages - you guessed how many I had in that moment! And I can't even begin to tell you how many different emotions where floating around in my head right then - fear and awe being the two most prominent!

I was so scared because he can't have any pressure to that side of his head and here he was leaning against a hard plastic bed rail. I also couldn't help but think how many times the nurses have all walked out of the room with the rails down because he doesn't move much. He would have fallen out of bed and probably died when his head hit the floor. And unbelievably, the nurse did not tie his hand down when she came to get me so he could have also pulled the drain out of his head or his trach out of his neck. Both having dire results. She told me that he listened to everything she said to him all day so she figured it was ok. (I don't think she has kids)

Then of course, after my heart stopped jumping out of my chest I couldn't believe he was able to do something like that! That was so damn impressive!

But I walked up to him and was talking very fast and very firmly because I was just so scared. I said something like "I can't believe you did that! You scared the crap outta me! You can't sit up yet! What are you doing? You need to be still! Don't ever do that again!" and then I realized I was mad at him and I should have been excited so I leaned down right next to him and I whispered kinda loudly "Man, I am so friggin proud of you right now!" and I shit you not - he got the biggest smile on his face and his the brightest twinkle in his eye. The little shit!

I swear to y'all - I am gonna die long before my time should have been up! I just bet my heart looks like it's 90 years old already...

Day 48 - July 18, 2008

I was a little bit late getting to the hospital today because I had to go to the orthodontist (I have neglected my braces too long) and then pick my sister, Kim, up at the airport and one of my absolute favorite nurses was chomping at the bit for me to get there. When I finally did she came bopping out to get me (Kev is in a locked down area) and was like "We have a surprise for you!" I hurried up to his room and they had his bed in an almost 'sitting up' position! It was just so exciting!! It looked like he was just sitting on a bed watching tv. It was so great to see and once again, I will say that he is progressing rapidly every single day. Today he was more alert and he seems to be responding more. I noticed too that his left hand movements are a bit more steady every day.

I have to say that it is very impressive to me that some of the nurses and physical therapists are as excited as I am about all of his progress. It warms my heart every time I hear one of them get excited telling me about something he did or see a sparkle in their eye when he does something in front of all of us. I will reiterate something I said a long time ago - if you have bitter feelings about mankind, please go to a burn unit. Or just learn from what you see here on this blog.

So East Brady is having it's annual Riverfest this weekend and I guess a bunch of Kevin's friends all rode their skateboards in the parade tonight. I sent Breezy home with my digital camera to film it and I can't wait to see all the kids. I'll bet they all loved riding right down Main St and Kev would be grinning seeing everyone do that for him. Pretty cool, huh?

I sure miss Breezy. I hope she's having fun though...

To be honest, this is not one of my better posts and I am calling it quits early tonight. I woke up with a headache this morning and it's still just lingering. I sure hope it's gone by tomorrow.

Take care, everyone!

Day 47 - July 17, 2008

Some good news...and some bad news.

First the bad. It doesn't look like we will be going to Tampa by the end of the month. Of course, this could change. But so far it's a no go. This is because Kev has the ventric in (the drain in his head). Tampa is a rehab hospital and the patients need to be in stable condition before going there. An open drain is not a stable thing. The neurosurgeon has no idea when he will go, and a shunt could send him sooner, but he doesn't want to do a shunt because first, Kev's skin is not healthy enough yet due to the burns and second, shunts are not very reliable. What they are doing is leaving the ventric in and hoping that it tricks the brain into believing it is absorbing that fluid on it's own and maybe it will start doing just that.

Now for the good news. Kevin really is making amazing progress every single day. This afternoon he was able to take this 3 inch long plastic tube (about an inch in diameter) and put it on each of his fingers on his left hand and then he was able to put it on his thumb and forefinger of his right hand. These are considered fine motor skills and it's amazing that he is able to do this already. Granted it's only his left side doing anything, but it's a start.

At one point he also waved to me. He brought his arm up in front of his face and I brought mine up as well (more to protect him from hitting his head) and I started waving to him and he waved back. 3 times no less!

Tonight he also had quite an attitude. I am wondering if he was upset about his right side not working so I did explain to him again (already done, Holee - but thanks!) that everything is there, but that we are going to have to work on getting his hand and leg to function correctly. Anyway, he just held and touched his right hand for about an hour. And every time I touched his left shoulder or rubbed his arm - the little bugger would swat my hand away. Hmmph! (LOL) But seriously, I think he was just in a mood and I am fine with that. Heck, I get in those moods all the time!

And now for the best news of all - Kev had 2 CT Scans today. One regular one and then they inserted dye (I think) into his head to see how things are looking. The neurosurgeon said that Kev's brain is looking better than it did the last time they did a scan.

Understand that I am no doctor - but I honestly do believe that them draining all this fluid from his head has released a lot of pressure and that's why he is doing better every day.

I could so be wrong, though.

On the home front, poor Breezy made it home ok only to find that someone had hit her car at some point during the past 2 months. Of course they left no info with the apt manager, so it looks like we will have to deal with it financially.

Ya know...a break would really be nice...

And then of course there's Moe. Her flight from San Antonio was so delayed that she is stuck in Cincinnati OH for the night. She missed her connect and they couldn't get her to Pittsburgh until tomorrow morning.

You know that song "Some Guys Have All the Luck"? If he's single, send him my way - maybe it'll rub off...

Day 46 - July 16, 2008

This was an exhausting day. Kevin was awakened at about 6am and I left at 10:30pm and he was still awake. He did not sleep a wink today. Mind you - that is truly exciting as opposed to him being in a coma, but wow - is it tiring! I don't think it would be so bad if you didn't have to fight him all day long to keep his hand away from his head and all of his wounds. And every now and again he is just throwing himself all over the place and four times today he put me in a headlock for what I assume is a hug and let me tell you - he is still a helluva strong man! It's kinda funny really, he puts his arm around your shoulders and pulls you down to where you are laying your head on his chest. Just a simple hug, right? Ha! It would be if he didn't hold you down, lol. Ah well...I will take it! It's still incredibly wonderful to have him awake!!

It was really hard though to leave him tonight because he was awake. It makes you feel like you are abandoning him because he will be left all alone then. You just have to wonder if he is laying there scared. I sure hope not and I do know that the nurse was going to give him something to help him sleep if he didn't soon after we left. (I just called the nurse and Kev actually fell asleep on his own once the lights were dimmed and the tv was turned off. Thank goodness!)

So Kev kept turning his head today and trying to look out the window. If he is doing it tomorrow, I am going to see if we can turn his bed a little bit because he has to roll onto his left side and we can't have him doing that. I am not sure if he can see just the light or what yet, but I know there is something there - at least in his left eye.

The nurse and I had a long discussion tonight about Kev's right side and how he doesn't move it. The nurse did his nightly assessment and mentioned that he doesn't 'believe' Kev can see or hear on that side. Now this is not a doctor's assessment, but it's something I already mentioned on this blog (I think I did anyway). If you stand on his right side, he doesn't even know you are there. If you are on his left side, he will turn his head when you talk or come into his view. And if you put your finger above his right eye, he doesn't even blink. Put it even remotely near his left and he is jerking away from you. Obviously we need to see what happens in the future about this, and you never know if/when certain neurons can be 'rewired' so let's just hope for the best about this.

Well, it's a bummer but Moe is going home tomorrow. And even worse - so is Breezy! Breeze will be gone for 11 long days! This is sure going to be hard without her here. But she needs to go home and have some fun. I am also glad she is going home now because Tim is coming back next week for a few days (he went home for a month) and she just doesn't know what she wants. Mostly she is just very angry, but then she also feels guilty about feeling that. It's a tough situation. My whole problem with this is that Breezy can react to what she's feeling. Kevin can't. And I can't help but think that Kevin started getting better once Tim went home. Was it because he didn't have all of the turmoil and frustration and anger to deal with as well as all of the physical ailments and infections? I can tell you this - if Kev starts having issues - Tim is gone! We have made great strides in the last few weeks and I won't have it going backward because someone has a little bit of guilt. And you know how you can tell it's guilt? Just ask one question:

Would he or his family have ever called/talked to my kids if this hadn't happened?

(phew - now that I got all that off my chest...)

So back to the good stuff, did I mention that Kevin was awake all day...

Day 45 - July 15, 2008

This was another one of those uneventful days. Kev is still moving as often as he can and today he even lifted his splinted leg up over the bed rail, but not much else happened.

They are still draining fluid and will be for days yet. And all of his numbers look good too. So I am going to just not post much tonight.

I will end with another funny story from today. I think I told y'all that I call him babe and honey and the like (but in all fairness I call Breezy that too). Well, I did this tonight and Breeze was joking and said "Come on, Kev. Tell her to quit talking to you like that". Didn't he reach up to my face (I had my mask down below my lips a bit) and he pushed my mask up over my mouth and held his hand over my mouth for almost a minute. I sure hope he was joking around .

Don't all of these things just give you hope that he is going to be normal again?

Day 44 - July 14, 2008

Today they put a drain in Kev's head and they are removing 15 CCs of fluid every hour. They plan to do this for 7-10 days and then, if he doesn't start absorbing on his own, they will have to put the shunt in. I am happy to say that the first day they drained fluid they sent it to the lab and so far - no bacteria has been found. I am a little concerned though because Kev did get a slight fever tonight and he hasn't had one for about two weeks now. Hope it was just a little bug or something.

And it was a real bummer - but his hands are back to being splinted and wrapped. Because he was so active with his left hand, he tore the graft off of his pinkie finger. This is the only finger now that has tendon showing (all the rest have healed). They have decided just to let it go and see if it heals on it's own, but he's gotta be wrapped now. And let me tell you - he really hates that. Tonight he kept rubbing his leg with the end of his splint really hard and I thought he was just trying to scratch that area and I looked down and he had worked his hand completely out of the splint and all of the bandages. I honestly couldn't believe it! This kid is gonna rival Houdini, I tell ya! Even the nurse was amazed.

I also had a chat with the ophthalmologist today. We are wondering if Kev might be blind out of his right eye. Obviously, we don't even know about the left yet either, but he does track movement with that eye sometimes. I am not sure if he does at all on the right side. We also are wondering if he is deaf on that side as well. It is possible for any of this because of the removal of the portion of the left side of his brain. I sure hope not, but I guess time will tell. I will say that when we stand on his right side - he doesn't even acknowledge us.

I am not sure if I mentioned the other night that Kev was taking his left hand and touching his right hand with it. It almost looked like he was trying to find out if it was there and if it would work. He was bending all of his fingers back and lifting it up and trying to move it. It actually broke my heart to see it because I just don't know what Kevin was thinking.

We also capped Kev's trach today, but he didn't say anything. It was so hard to be there when they did it. They told me he would have to breathe differently and it was just devastating to see the look in his eyes - like I was going to just let him die. It took quite a few breaths for him to get it right. It was just a horrible, horrible part of the day! We only left it on for about an hour and frankly, I don't want to be there when it goes back on. Babyish, I know...but I don't know if I can handle the look in his eyes again. (I will though because I would rather me be scared than him and I will just keep telling him how to breathe through it).

So that about sums up our day. It was kinda a quiet one because he was sedated from his procedure earlier in the morning. We mostly just sat in there with him and left him sleep. As soon as he would move we would just flock to his bed. Sounds like he has us wrapped around his little finger, doesn't it? LOL!

Day 43 - July 13, 2008

Another fine day! Same as yesterday pretty much, but the neurosurgeon drained another 180 CCs of fluid from Kevin's head (they did not put a shunt in as Kev's skin is not healthy enough yet). That's a whole lot of fluid in a 2 day time span and it looks like they are going to put a drain in tomorrow possibly. I think this is giving y'all a good idea of exactly how large Kevin's head is. It is still very big, but removing that much fluid has reduced the size.

This is going to be one very short post as I just want to lay down and watch a movie tonight.

Before I go though, I want to quickly tell Andrew's family (Wendy, Jon, Carol, Stan, Judie and Jodi) that I will call as soon as I can. I have been trying to call Jodi for almost 2 weeks and it's so embarrassing to say that there just hasn't been time (other than late at night and I won't call then). I think of all of you every day and can only wish that we get to meet someday in the future. And Jodi? Thanks for sending me pictures of Andrew. He was so incredibly handsome. This is just such a sad thing...all of it.

I also want to thank everyone for all of the cards and gifts. It is amazing how supportive this country is of it's soldiers. We have read every letter and card and kept every single thing for Kev to see when he is well enough and it appears we are going to need a giant sized U-Haul when we move to Florida, lol.

I will end with 2 little funnies of Kev from today. I have been told by the docs that he may never surpass a 3 or 4 year old level. Well there have been quite a few times where his hand somehow came loose from it's restraint. Well I busted him tonight! I caught him putting his arm straight up from the elbow and shaking his arm in a circular motion to have the restraint fall down his arm to his elbow. This enables him to move freely as he can lift his arm completely then. Does this sound like something a toddler would do? Heck no!

And last, Kev is very determined to scratch a certain graft area. I know it bothers him, but we just can't allow it. So when I told him NO and pushed his hand away - he put his hand up to my shoulder and pushed me. Hard! He was mad that I didn't allow him to do it. And he actually pushed me away from him twice tonight. I had to turn away so he wouldn't see me grin.

Isn't this awesome?!

Day 42 - July 12, 2008

Can you say stage 10?!!!

Yep. Kevin is now in a stage 10 - possibly a stage 11!! This was such a wonderful day!!

First, let me say that I was misinformed of the amount of fluid that was drained from Kevin's head. It wasn't 6 CCs - it was 140 CCs. That's a whole lotta fluid! But then today, after Kevin had wound care this morning, he was actually draining fluid from somewhere - possibly from his ears. It turned out to be ok, so I will move on from there.

So I went in by myself at noon while Breezy and Moe grabbed some lunch and the nurse was so excited. She said "hurry up - get dressed and get in there! I didn't give him any meds for pain or agitation because I want you to see what he's doing!"

I hurried up and couldn't believe it. Kevin was making purposeful movements. His hands were unwrapped and he was taking his left hand and trying to scratch different areas that were grafted. And I don't mean that he was just rubbing an area and that it could have been reflex - he lifted a towel that was on top, moved a second towel to the side and was digging his fingers down under the dressings that were covering his wounds. DEFINITE PURPOSEFUL MOVEMENT!!!

And one time he tried to touch his face and he couldn't reach it (I was holding his hand back so he didn't bump his head) and do you know what he did? He picked his head up and moved it down toward his hand. I called the nurse in because it scared me that he wanted to touch his face and she said it's ok - let him touch. I couldn't believe it but all he wanted to do was scratch his nose. He just scratched it and put his hand back down! Amazing!!

Another time he lifted his hand to his face and all he did was touch everything. He touched his nose, his lips, his feeding tube and his chin. I just couldn't believe it!

So then the neuro doc came in at about 6:30 or so and he assessed Kev and was amazed at the change. Kevin's eyes were wide open and he was following the doc's movements. Now Kev didn't do everything that we asked him to do, but he did do some of it.

And Kev did purposefully touch my face about 3 times tonight. He would look right in my eyes and bring his hand up and just feel my face. And his lips and tongue were just going crazy so I believe he was trying to talk. I am going to talk to them tomorrow about capping his trach.

This is just so exciting! He did this stuff all day today! For all of us! Breezy, myself and Moe! Yay, Kevin!!

So I am going to quickly ask that we all keep positive thoughts for tomorrow. The neurosurgeon is planning to put a shunt in Kev's head to keep the fluid draining. It's just not doing it on it's own. I will know more tomorrow as I didn't get to meet with the surgeon today, but I won't be back here to fill y'all in until after the procedure is done. Positive thoughts...positive thoughts...

That's it for tonight. I want to just sit here and talk to Moe and Breezy about how exciting today was.

Cool, huh? I am just dancing in the clouds tonight!

Day 41 - July 11, 2008

The procedure went well today. I talked for quite a while with the neurosurgeon and this is what I learned:

The part of Kevin's brain that was damaged beyond repair has basically broken up into tiny particles and is now floating around in the CSF (cerebral spinal fluid). This is causing the CSF to be thicker than normal and it is also clogging the 'tube' (can't remember the right word for it) that allows the CSF to move to other areas of the body and be absorbed (I so might have some of this wrong). This is what is causing such a massive buildup of fluid on the left side of Kevin's head. The doc went in today and removed 6 CCs of fluid and will continue to do this procedure every other day until it is at a more normal capacity. I should have asked why you can't remove more of it at a time, but I just didn't think of it then. I am sure there is a good reason for it or they would do it though.

He also explained that Kevin's new skull will be titanium and it will be at least 6 months before it will be put in.

I am also very happy to report that 100% of Kev's grafts 'took'!!! Yeah!! We finally got to see his eyes today too. It was just wonderful! I am strongly thinking that they will be stitched shut within the next few days though as they still don't shut on their own, but we get to see them for now.

I have to admit that I struggle coming home some nights. It really just depends on the nurse that has been assigned to him. Tonight I didn't want to leave as I feel his quality of care just isn't what it is with some of the other nurses. It's not that I feel any nurse is a horrible nurse - it's just that some are more caring than others. And please know that I understand personality conflicts. I firmly believe that I don't have to 'like' the nurse assigned, but I do have to feel you are doing a good job with him. But it's those nights that I just want to stay there all night and take care of him. And it's those nights where I don't sleep very well. Unfortunately, as I said - tonight is going to be one of those nights. Hopefully all will be fine...

Day 40 - July 10, 2008

Not a super great day today. One of the docs noticed that Kevin's head had grown substantially in the last couple of days and scheduled a CT Scan. It turns out he has a lot more fluid built up around his brain. So tomorrow they are going to go in and drain some of it off. The procedure will be done in his room so there is no need for anesthesia and that's a good thing. But it's still dangerous because each time there is any form of incision you run the risk of infection. At this point, Kev has no infections at all and I am really hoping it stays that way. Even his kidneys are looking fantastic!!

And I am thinking that Kevin's sense of taste is returning. Obviously I am not sure about this, but I put a spearmint flavored moisturizing cream on his lips often times during the day. He licks it off immediately and you can tell he brings his tongue back into his mouth and acts like he is eating the cream. And one time I dabbed some directly onto his tongue and from then on he would hold his tongue out until I dribbled some on it. It was like he was going to town on it. I wonder if he can smell too? Hmmm...will have to do some experimenting tomorrow maybe...

That's basically all that happened today. Brianna's friend Jen has been visiting for a few days but she left this afternoon. And Moe is coming down tomorrow for a week. We were planning to go on vacation this week together (with my sister, Kim) to Florida to see Chrissy, but Texas it is. Although, this is definitely not a vacation. But still, it will be nice to have her here.

Day 39 - July 9, 2009

Not much to report tonight. Kevin is pretty doped up on morphine and has been all day so he isn't doing too much. He was lifting his left shoulder on and off and I believe it was in response to the pain. Almost 3/4 of his back was donor skin for the areas that needed grafted. This means that the skin was basically scraped off of nearly his whole back. From what I understand - that is incredibly painful.

I was also told that Kevin is no longer "technically" in ICU Burns. They are keeping him in the ward due to his trach collar, but he is not having lab work done hourly like they do when you are in ICU. I will be the first to admit that not being in the unit scares the crap outta me, but I don't think he can go to Tampa if he is in ICU so I am going to just pretend that we are still there. I am glad he still has a personal nurse 24/7 though because he wouldn't if he were in the regular burn unit. I know he appears to be doing much better, but I guess I still need my hand held for a little while.

I also learned that the neuro docs signed off on him earlier this week. That means they don't check him daily anymore as there really isn't anything more they can do.

I am a little bit scared as it feels kinda like we are being abandoned, but I don't think they would do it if we weren't ready, would they? And I need to face up to the fact that this could be the way it is forever, so I may as well get used to it.

I was also informed that Kev would be going to Walter Reed in DC to have his 'skull' replaced. Not sure when, or even how long we will be there, but it will be nice to be closer to home for a bit. That's only about a 4-5 hour drive so we can have family and friends come see us.

Speaking of family, my niece Chrissy lives in St Pete (right near Tampa) and I can't wait to see her. And I already told her to get out of the kitchen cause I need to cook a real meal. Turkey, stuffing and mashed potatoes. Oh my - just the thought of a home cooked meal makes me sigh...

Day 38 - July 8, 2008

The surgery went very well today! I had a very rough time when I went in to see him afterward, but everything really did go well. It was very hard to see him because first, his head was even more swelled than normal. The docs said this was due to gravity and that some of that fluid will recede now that he is not laying flat. I sure hope so. It's just so hard to see him so swollen.

Second, they ended up grafting both of his eyes and his chin. If y'all can do this - picture miniature rolled sleeping bags stapled to his eyelids and chin. Truly. They are each about 2 inches long and about a 1/2 inch around. It is so difficult to see his eyes closed like that. Even worse than the stitches. But I know it's for the best and it's possible that when these 'things' are removed in 4-5 days, we may be able to leave his eyes open for a while. He will have to be able to close them on his own for this to happen and chances are in time we will need to restitch them, but one day at a time, right?

Third, the bulk of his back was the donor site. Very difficult to see the bloodied covering, but again - a necessary evil. I just hope it doesn't hurt too much. They are able to give him morphine so at least he won't be in too much pain.

Fourth - his body temp was extremely low after the surgery. They had to turn his room temp up to 85 and put heat lamps on him. Dang! It was so hot in there!

On a good note - the meningitis is gone. Flat out GONE!! YAY!!!!

And assuming that he doesn't get pneumonia and all of grafts 'take' - we will be in Tampa, FL before the end of the month. If I haven't mentioned that yet, the best TBI (traumatic brain injury) hospital is there. I hear it is a renowned neuro clinic. This is the place where we will get help for the head wound. Where we are now is the best burn unit in the world and they have pretty much done all they can for him.

And the best news of the night? When Breezy was in seeing Kev tonight he was starting to come out of the anesthesia a little bit and he took this huge breath and let out this really loud sigh. Even the nurse whipped his head around in shock at hearing a noise come from Kevin. Breezy could tell that he was kinda responsive so she started telling him not to open his eyes and what was going on and she said he started crying. She just rubbed his shoulder and he went back to sleep within a minute. To be honest, I think I am forgetting something else in this part of the story, but I sent Breezy to the movies with a bunch of newfound friends so she isn't here to help me tonight. Daniel's brother, Matthew went too. I am glad they are getting a break.

All wonderful events in the scope of things, right? I sure think so.

Day 37 - July 7, 2008

Kevin did 2 things today that are not normal daily things. First - he moved that right arm quite a few times today. Hurray! I would move his arm so that it lay beside him and he would put it back on his hip. I would say he did this at least 7 or 8 times. I was so excited. This was something he would do back in the beginning when he was just starting to move his left arm, so maybe it's a sign...

Second - he yawned 3 times! I have never seen him yawn and frankly - why would a person in a coma yawn? I wonder if he was kinda awake then? I have tried to find out on the internet if people in a coma yawn, but can't find anything yet. It was exciting!

We did have an issue with his left eye though. I can't say this for sure - but I think he was trying to force his eye open and he ripped his stitch a little bit. Because he is on a blood thinner, it bled for hours. It just wouldn't stop so I asked the nurse to call the doc in case blood was also building up behind the eye. When we took the goggle off to check things out I was appalled. His eye was completely covered by this huge clot of blood. GROSS! The nurse and I cleaned it all up and I was pretty proud of myself for not gagging. We did find out that there was no build-up so we are in the clear about that. Thank goodness.

So Kev is going in for surgery first thing in the morning. He is having the last 5% of his body grafted and some form of surgery on his eyes. I believe they are just cutting part of his lid and below his eye to release some of the tension. Keep us in your thoughts tomorrow - surgery is always so scary. Complications abound when your body is already weak and Kevin has lost so much weight that he looks weak. I know he's not - he keeps lifting that leg with the metal splint on it and it has to be heavy, but still, he's not up to par. So again, just keep us in your thoughts.

Some More Pics of Kev and Us

These were taken on Jan 2 of this year. Kev was heading back to Ft Leonard Wood in Missouri, where he would leave for Jump School (Airborne) within a couple of weeks. We were just goofing off at the airport.

I wish I could have kept him home somehow...

Day 36 - July 6, 2008

Today was rough. Emotionally rough for me. Kevin is the same as he was yesterday so no changes there. But as you all know - today was his birthday. I can honestly say - it sucked big time.

This was the very first birthday for either of my kids where it wasn't a good day for said child (although Breezy's wasn't a barrel of laughs this week either - but we did try). I am a HUGE birthday person and this was just so hard to deal with today. To be honest, I sat on the garbage can in his room quite often today and just cried. I try not to do that in his room, but I just couldn't help it on his birthday. It's really just not fair that this kind of stuff happens to good people. Kev is truthfully one of the nicest people you could meet - not to say he was an angel because I know he wasn't - but he really was nice to everyone. I just don't understand why.

I couldn't help but think too that this could be what all of his birthdays end up being like. I know I shouldn't think like that, but it was just such a maudlin day that this is how my thoughts went. I mean, what am I going to do if he never wakes up? And at what point do you realize that he isn't going to wake up? 3 months? 6 months? A year? Two? At what point does the hope go away? And can I deal with it when it does? This just really sucks.

And some days I just feel so hopeless. So full of despair that this has happened. All I ever wanted was for my kids to have a happy and good life. Instead they get a father that walks out on them completely, financial struggles aplenty while they were growing up and constant battles and problems concerning every day life. And now this. And let's be frank - this didn't only happen to Kev - it also happened to Breezy. I know too that none of this was my fault and I didn't fail them as a parent, but it doesn't make it any easier to see what life has thrown at them.

This just really sucks. And you know what? I am depressing even myself so I think I am just going to go to bed and cry myself to sleep. Hopefully tomorrow I am in a better mood and we have a better day and I also want to apologize now for ranting. But this is how the day was and this is my place to vent about it.

P.S. And thanks everyone for the birthday cards!! We take a few in daily and put them in bio-hazard baggies and read them to him. He may not hear us - but then again - he just might.

Day 35 - July 5, 2008

Today was an extremely uneventful day. I did verify that Kevin is still in the stage 9 coma, but other than that - nothing happened.

Breezy and I did leave the hospital at 8:20 tonight instead of 10:00 as we always do and I am struggling with the guilt a little bit. But he had a nurse that gave him some morphine to ease his pain and frustration so he slept the whole time we were in the room. We knew he would sleep for the whole 2 hours due to the drugs so we chose to come back to the hotel early and rest for a bit. Maybe even watch a little tv. It's hard though, because you do feel guilty for leaving while visiting hours are available, but we realistically know he won't even miss us tonight.

As to dealing with his arm being tied to the bed, I still haven't figured out how to get past it, so today I just didn't look at it or truthfully even go to that side of his bed. It's the cowards way, I know...but it's how I am dealing with it until I come up with something.

So that's it for tonight. Like I said, nothing happened today at all. Breeze and I just took turns being in there and talking to him and we just can't tell if he is awake or not because his eyes are stitched shut and his arm is tied to the bed. Those were our only indicators and they are gone. Not sure what to do or think anymore.

And to finish off - one of the things I keep telling myself is 'an uneventful day is better than a bad day'. Let's just keep saying it, I guess.

Day 34 - July 4, 2008

When we walked in to see Kev today, his hands were not bandaged and only had a small towel wrapped around them. Pretty soon after that, PT (physical therapy) came in and took even the towel off and allowed us to really hold his hand. What a wonderful feeling! I can't say if he knew we were touching him, but it felt good to us - especially when he would squeeze real hard. And his left hand really looks great (other than his pinkie which is down to the tendon). The right hand doesn't look as good yet because it was more seriously burned. There is currently a wound vac on it to try to get some skin growing over the tendons (at least I think that's what I was told). Wasn't too long though before he was all wrapped back up. Poor guy.

We still have yet to see his legs. I can see some of the donor area, but I have never even glimpsed the burned areas.

To be honest, nothing much else really happened today. Unfortunately we did have to tie his hand even closer to the bed because he had managed to untie the knot twice and he was also able to somehow work his arm out of the restraint once this morning. He REALLY hates to be tied down. Always did. And his numbers were all really high today because he is stressed that he is restrained.

And so am I. I am really struggling with watching him being tied down. I have been sitting here tonight trying to figure out how to accept it and be able to watch it without having such a heavy feeling in my chest. I really just don't know how to do it. I know this seems like such a small thing and I know it's necessary, but it is the one thing that Kev really hates. But I gotta find a way to get past it. I just have to.

That being said, I am signing off to roll it around in my head. Hopefully something will click into place and I can look at it in a different way.

Day 33 - July 3, 2008

Today was kind of a tough day for us. Kevin is pretty much in the same status that he was in yesterday, which is really great, but they decided to stitch his other eye shut today too.

I knew it was coming. I was watching the lower rim of his eye droop down and pull away from his eyeball and his lid was pulling up more and more making his eye wide open. (gotta admit that I just figured he was controlling his lid better and becoming more 'awake' because it was open wider, but I was wrong.) I think I mentioned before that as the burns heal, the skin will tighten which is what is causing this to happen, I just forgot I guess.

And let me first say that I know this procedure was necessary. I want him to have the best possible chance at being able to see and this will help with that. But, damn. It was really hard to sign that consent form.

And I know this is crazy - but it just felt like I was losing all possibility of hope. Of those moments of lucidity. Of feeling like I can see my son in there. I mean, sometimes it really feels like he can see us and when that happens both mine and Breezy's hearts just soar with hope that he will come back to us. And I can't explain it, but we honestly just know when he is lucid. It's like this film over his eyes is gone and all's clear in there. It doesn't happen often - but it's often enough to keep us going.

And now we can't see either of his eyes. And I am thinking it will be like this for 6 months - until we have the surgery. How can I not see him for 6 months - I mean his soul, who he is? It's gonna kill me! It already hurts so much.

And let's not even forget about him. Can you imagine waking up and being scared shitless as it is and then not understanding why you can't open your eyes and wonder what's wrong with you? I was so worried about it today that every time he moved his arm I told him that his eyes were stitched shut and that they are fine, but that we need to keep them that way.

I just hate this. I really do.

So now you have heard all the bad, let's end with the good. Let's see...

Kevin had his first shower today. He will now have one every other day. They asked me if I wanted his hair cut but I asked them to let me think about it. I admit that kev would probably want it cut as it's longer than the military regulates, but I just need to see it for a few days (today was the first day that his head was totally uncovered). It's especially hard as it doesn't grow everywhere as of yet (not sure if it will?) so it's basically only on the top and the right side of his head. The left side is completely bald.

He also deliberately reached up and tried to pull out his trach today. He had a filter on it at the time that he did manage to get off. Because of this, his arm was tied to the bed a little bit tighter than it had been. He can still move it some, just not as much.

And last, but not least. The two nurses that worked with him this morning saw a huge improvement since the last time they worked with him (a week or more ago). The one nurse had this to say:

"He's in there. He just can't find the door. But he's getting closer!"

Come on, Kev! You can do it!!

Day 32 - July 2, 2008

Today was just a day. No real highs and thankfully no real lows. I'll take it. I really will.

Kev is still moving that arm around. Matter of fact, we had to create a sort of tie barrier because he whacked himself in the head with it this morning. Now he won't be able to lift his arm above his head, but he can still move it quite a bit.

His cultures are all still clear, which is fantastic. And although he does still have meningitis - it's not due to the bacteria. It is now due to the injuries and in time the swelling should just go down.

Nothing really else happened with Kev today. It really was just a quiet day.

We had a surprise birthday party for Breezy today in the ICU waiting room though. Strange place, I know...but what can you do. All of the other families there have become our family and since we are all there roughly 8-10 hours a day - it seemed fitting. We had pizza and cake. It turned out very nice and I was glad to do something for Breezy. I know it's hard for her not having her friends around her, especially as she was such a social butterfly. But we all had a good time. I think it helped all of us have a few 'normal' moments anyway.

Gonna sign off for the night. Breezy is here and we just want to lay around and BS for a bit.

Day 31 - July 1, 2008

4 for 4 folks! That's right...another great night!!!!!

First, let me say that if you guys recall - I had told you that Kevin was in a stage 5 coma. Well this past Sunday he was actually in a stage 4 and y'all can't even guess what stage he is in today....

NINE!!! Stage friggin' 9!!

In 2 days he has had massive improvement. (now I need to stress just like the docs did that he can go backward at any moment and he may never come past a stage 9). But still...STAGE 9!!!!!

I will start off with Breezy going in first today and while she was in there a doctor came in to do his assessment. Kev would not respond when the doc asked him to do anything, but he would when Breezy would ask him! It was the first time a doctor was present to see him respond. (did I mention the number 9?) Even the doc seemed excited and Breezy's face was lit up like a Christmas tree!! Oh - and he also made 2 sounds through his trach like he was trying to talk! Yeah Kevin!!

So later today I was in there and I noticed that when Kev's arm was thrashing about and I would speak - he would turn his head to me (he did this many times today for both Breezy and I). I honestly think he was turning to look at me and one time I lifted his goggle off. His pupil came directly to me and his arm came right up to my face. It fell within seconds (it is splinted and very bulky and heavy) and I asked that if he could hear me to touch my face. I kid you not - his arm came up to me and the back of his hand touched my face and even better - he wiggled his fingers like he was trying to touch my face!!! I know, I know. It coulda been a fluke, but can we really be sure it was? No - but we can't be sure it wasn't either. So I am taking it like I felt it to happen. My son touched my face and that's that! (nine!)

Now I have just a tad bit more to the story. As Kev touched my face I did get all teary eyed. And the next thing I knew - Kev had tears running down his face. Yes, it coulda been his eye drops, but I have never seen any form of tears run down his face (both eyes too) - even directly after the drops were applied (and they weren't just applied so who knows if there was any liquid meds in there). I did notice that his un-stitched eye was very bloodshot all of a sudden so I honestly do think he was crying.

Which is hard to think about. I mean - was he happy that he was alive? Was he scared? Did he know who I was and he was glad I was there? Was he frustrated? Did he not know who I was and want me gone? Was he in pain? All of these questions will probably drive me nuts. But you honestly just can't help but wonder...

Stage 9, I say! 6 more stages to go and he will be just like you and I. Talking and conversing like there's no tomorrow.

Do I dare ask for a 5th day? (S T A G E 9!!!)