Tuesday, September 30, 2008

Day 122 - Sept 30, 2008

This is just a very fast update - Kevin's shunt did need replaced. Apparently he had some fat grow around the opening of the tube that goes into his abdomen and it didn't allow any CSF to flow through. So they took care of the tube and they also changed the valve to a programmable one that will allow them to open the tube larger if needed.

He did very well through the surgery, but we had some problems throughout the rest of the day. He needed to go for a CT scan and while there he went into distress. They had to rush him back to ICU and get him stabilized. My personal thought was that he was distressed over still being on the ventilator as it kept gagging him and making him retch phlegm. I am not sure about that though, but they finally removed the ventilator about an hour ago and he is now sleeping peacefully.

I have to go back up to the hospital and stay tonight as they don't have a sitter for the night turn. I just came home to grab 3 hours of sleep because I stayed last night and he had a very rough night and I didn't sleep a wink. I was so exhausted. So I hope that I will have time to give a better update tomorrow night, but we shall see...

Monday, September 29, 2008

Day 121 - Sept 29, 2008

This is going to be a very quick update. Our second to worst fears were confirmed (the worst being infection or rejection of the shunt). The shunt is either malfunctioning or it is very clogged. We are back in ICU and Kevin is having surgery first thing tomorrow morning. They will either replace the shunt completely or they will replace the malfunctioning part if that is possible. The neurosurgeon is wondering if it is a valve on the shunt, but he can't be sure until he goes into Kevin's head.

So keep us in your thoughts for tonight and over the next few days. I will be staying overnight at the hospital with him tonight and there is no internet in ICU, so I will update as soon as I can tomorrow.

And poor Joyce - what a vacation she is having, huh? I did send her and Breezy to a Steelers bar here in Tampa to watch tonight's game though. At least they will have a little bit of fun.

Ok - gotta get back up to the hospital.

Sunday, September 28, 2008

Day 120 - Sept 28, 2008

Things have been going way too well lately and I should have known it. Unfortunately, Kevin's shunt quit working today. Actually, I think it quit yesterday, but it was very obvious when I went in this morning. I did notice yesterday that his head seemed bigger, but I thought maybe it was just the way he was laying in bed. Well, when I went in this morning, his head was nearly double the size it was when I left last night. He was also moaning and just moving all over the place trying to get comfortable. I had neurosurgery paged and sure enough - it was clogged. The doctor did 'unclog' it, but we are unsure whether that will fix the problem or not. I was told that he may have an infection or that the shunt may be malfunctioning. I should have more info tomorrow and if there is a problem with it, we will be doing emergency surgery to remove it. Please just keep us in your thoughts tomorrow.

Other than that, it was a very quiet day. We kept him medicated due to the pain, so he slept most of the day away. It was unfortunate that my friend Joyce arrived today. I so wanted her to see the happy Kev and not the one from a month ago. Maybe tomorrow, right? In the meantime, I am happy to have her here. I just hope that the rest of her time with us isn't as bad as today was.

I am going to cut this short tonight as I am exhausted. I haven't had such an awful day in a while and I think my body and mind became spoiled.

Hopefully tomorrow brings good news...

Saturday, September 27, 2008

Day 119 - Sept 27, 2008

Not too much happened today. Things are always a little calmer on the weekend - ok, a lot calmer. We did go to the little store here at the hospital today and Kevin went through a pile of movies and picked two out - Hot Fuzz and Spiderman. His first purchases (grin). I know he already owned Hot Fuzz, but I don't think he had Spidey. I was trying to keep him away from the violent movies, but it wasn't going to happen, lol. I won't allow war movies though and so far he always passes them by. I don't know how much he remembers, but I don't want to trigger anything yet. It would be better if he could talk first, kwim?

I will say that we were watching a movie last week and a preview was on for Ironman. It had a combat scene and Kevin did seem to get upset. His eyes always go straight up to the ceiling when he wants to close them. That's what he did. We hurried and put the movie on and I kept watching for further emotions, but didn't see any. I know that doesn't mean he wasn't thinking about it, but I couldn't tell.

We have also been working on new words, but Kevin gets disgusted because "hi" almost always comes out. Someone thought Kevin was saying "no", but that's not true. We are very close to "Thank you" - it comes out more like "think ah" though. He is so close, but we have to have it right, otherwise it's just making sounds. At this point, we just keep trying to get him to sing. The more he sings, the more letter sounds he is making. Once we know what he is able to do, we will know what words we can work on.

I also want to take a moment and thank everyone for throwing out food ideas. Some of that I just hadn't thought of. I am going to try to do scrambled eggs next week and I was thinking about stuffing with gravy...and mashed potatoes and garlic green beans, lol. I think I am stuffing a chicken tomorrow so I was thinking leftovers for him on Monday. I think these would also work as long as I keep the bites small. But I digress, thanks again for all of the ideas. I wrote everything down and will keep at it because we will be eating like this for a little while yet.

I have quite a few questions in my inbox, so I am going to hit just a few tonight. Breezy and I haven't had dinner yet and we want to head out for something. I am just sitting here waiting for Kev to go to sleep first.

Brenda, where did you find these items for your mom? I can just go buy them. They are all really cool things!

Suzanne, you mentioning Guitar Hero made me smile. Kevin loved that game and I just had his xbox and his guitar brought down. He can't use it yet because you need two hands - but eventually, right?

Jan - 'go for it' on adding the cards to the boxes you send overseas. That is such a nice thing to do. We were also told we would probably be here at least 6 months. Once that time passes, we will go back to TX for the plate to be put in his head. I don't know what after that.

Jocelyn - download Spybot at Download.com. It's a software title that might be able to help you with applications running on your system that you are unaware of.

Ok - there are more to answer, but I will get to them tomorrow night. He is sleeping and I want to head out before the restaurants all close. It's nearly 10pm here already.

Friday, September 26, 2008

Day 118 - Sept 26, 2008

Did I mention that I raised a little shit, lol? I was exercising his right arm tonight and he didn't want me to do it because he wanted to watch a movie. Well, I gave him the little pep talk that I reserve for this ordeal and he shrugged. I said "do you want to walk out of here?" he said 'no'. I said "do you want to play Xbox 360?" he said "no". I said "So what? You want to be crippled when you don't need to be?" and he shook his head yes. I said "well, if that's your attitude then I'm going home". He just looked at me in shock for about 3 seconds and then he burst out laughing. That, of course, made me start laughing because he knows damn well that I am not going anywhere - and he called me on it. I tell ya - he has me wrapped around his little finger. What a punk, huh?

And today Kevin got to ride a bed bike. Well, he tried to anyway. This is basically a set of bike pedals that your body actually lays in bed and you put your legs into. You pedal just like you would normally. Kevin did very well when he did just his left leg and he actually was able to push the pedal down when he had only his right leg in (yay!). Unfortunately though, when we put both legs in at the same time he couldn't stand the pain. I think it was more his hip because it is very mobile when pedaling. I can only assume it's the bone growth, but we will need to look into it further next week.

He also ate mashed potatoes and lime jello for lunch, with powerade to wash it down. I need to go shopping for some different flavors of gatorade. They only have blue here and I want to introduce new flavors to him. And the speech pathologist thinks he might be able to handle the inner part of the pizza as long as there isn't a lot of cheese on it. He is doing very well eating. More and more every day. And we like the fact that he automatically knows not to put more in his mouth until he swallows what he has. His hand/mouth coordination has improved greatly as well. He never misses anymore.

I want to quickly say "thank you" to everyone that defended me here. I really do appreciate it. I sure am lucky to have such great friends, both in real life and online.

That being said, I am going to move on. Although I feel the need to rant sometimes, I just don't have the energy to give it much time. My days are very full, with literally no time to dwell on the drama. This doesn't mean I have decided not to press charges, I am still thinking about that.

So to answer a question or two...Jocelyn, you asked about pornography showing up on my blog? I have no idea why that would be, but I can guess that you have a virus or some sort of application running on your computer. I have asked a few people if they see anything like that and to my knowledge - no one else does. If other people do, please let me know.

As to Jessica commenting about me never taking a break - you are pretty much right. I just can't. Even on the days that I go somewhere for dinner or the days we went to the beach and the casino - I was still in the hospital at least 12 hours. Many times it's closer to 16 hours. If I do leave, I try to always have Breezy here, otherwise the sitter needs to be in the room and personally, it would drive me nuts to have a stranger staring at me for any length of time. I would rather have my mom and sis any day and it's all about what Kevin would want.

I did go and buy Kevin a new laptop as his was in Afghanistan with him and I won't bring the germs into his room. So we now have the internet through the day and I can get the blog done earlier sometimes (depending on Kevin's mood) and I am just now trying to clean up my inbox. An impossible feat, I tell ya! But this means that I have more time to sleep now - which is always a great thing (grin)

Debbie - I don't know what kind of soft foods Kevin likes. It's sad to say, but his tastes have changed since joining the Army. I know he liked that "easy mac & cheese" stuff from Kraft and pudding of course. I really just don't know what's out there and I need to go to the store to scope the situation out. If anyone has any ideas - throw them at me. Anything soft or even going into the medium soft stage.

Sherri - I know you are retired now - so hop on a plane and visit! I would love to have ya' (and anyone else that is close enough)

Which reminds me - to the person who's daughter is at USF - stop in next time you are down and to Mary Ann - the same goes for you. Stop by in Feb when you are here visiting your daughter in Clearwater again.

Heck - we'll just have one great big party! LOL!

Thursday, September 25, 2008

Day 117 - Sept 25, 2008

Kevin had his first somewhat solid food today - Stouffers Mac & Cheese. He was
so excited - his face just lit right up when I showed it to him. He also did
better with eating it than with the cheesecake and mashed potatoes. We believe
he has limited feeling at this point in his mouth; mainly in front of his teeth
and his tongue. We have noticed it’s gotten better daily, but his tongue still
pushes the food out and he has to suck the food back in. It doesn't help that he can't truly close his lips. He's getting there and I saw it one time, but we have more practice to go on that one.

I know one thing - he is just dying for pizza. We went outside today and we have
to pass the pizza place on our way and as we walked by, he just held his hand out
and was making all kinds of noises to try to get us to give him some. Thank
goodness he knows he can’t have that yet and does it all in fun. I am wondering
if we can give him very small bites of Pizza Hut’s pan pizza because it is very
soft. I am going to run it by the speech pathologist and see what she says. I
just bet she tells me to be patient, once again, lol.

It’s just hard to be patient because he is doing so well, kwim?

We did take him to the gym today and he was able to play some basketball (with
one of those child hoops and ball). He did very well. And we worked quite a bit
on increasing his abdominal strength. We need to get those stronger so that he can use the automatic lift that they have above each of the beds on this ward.

That pretty much sums up what went on today with Kevin. I know a few of you
asked here on the blog and I also got more than a few emails from people wanting
to know why Tim and Beth’s blog is down. To make a long story short - Breezy
found a newspaper article that was written by an unsuspecting journalist and it
had parts of my blog written in it with Tim and Beth claiming them as
their words. Basically, they stole my words (and my pictures) and put them on
their blog as if they wrote them. Outright plagiarism. I knew they were on
there from the getgo and I was nice enough to let that go, but once the words
were in print and the article made it appear that Tim was here and struggling
with all of the issues that have went on during Kevin’s recovery - I realized I
could not let things go any longer. Breezy was so angry when she came across the
article and I had to step up and force them to take it down. I am still
considering pressing charges - the law is on my side as I do have proof that I
wrote the words - but I have not decided yet. I told them they need to publicly
admit what they did to stop me from filing the lawsuit. I am tired of them making me out to be the bad guy when I am not the one doing wrong. And I’m not even going to
get into the fact that the blog was full of lies - ones that hurt my kids.

So there it is. I am sure that their friends will come on here and slam me, but
it doesn’t matter to me. I only care about my kids and how they react to the
things around them. Breezy read their blog faithfully and was always so mad
about the things they wrote. I kept telling her to look the other way as I did,
but once a line was crossed, I even had to say something. I only wish that
people would look at the facts instead of hearing the lies, but I guess people
are always loyal when they don’t see both sides. I am lucky in that everyone
that knows me personally knows what has really happened all these years.

And to finish up, I am going to link to the newspaper’s blog posting for you all
to see what was written. I will say one thing - the journalist is a wonderful
woman and she made things right for us. I know that she didn’t know the truth
and she only read their blog and felt it was such a sad story, but I just can't allow it to continue. After all, if they hadn't stolen my words and claimed them as their own - no article would have been written and I would have looked away as I have all this time. Their blog would have been able to remain online and it's nobody's fault but their own that it had to come down.

So here are the articles (both the first and the one that made things right):

Article 1

Article 2

And I might as well say it now while I am ranting - to the anonymous person that posted "forgiveness" a few days ago - it's not about forgiveness. It's about protecting your kids and any good parent would do anything in their power to keep their children safe and happy.

I personally don't like Tim. How can anybody like somebody that gives every excuse he can think of as to why he walked away from his kids. But what I want doesn't matter. If you think about it - I signed papers allowing Tim to come here. I even had his trip paid for so it wouldn't cost him out of pocket. Does that sound like someone that is willing to hurt her kids to get back at her ex? Not to me, it doesn't. So once again - it's not about forgiveness. It's about my kids!

Wednesday, September 24, 2008

Day 116 - Sept 24, 2008

We created a monster, lol. Kevin now sings constantly. We were walking down the
hallway and he was just singing at the top of his lungs being the ham that he
always has been! It was just so funny!

One great thing about this is that he is making all kinds of sounds while
singing. He’s not comprehending that if he can sing the words, he can say them,
but he will.

Not much else happened today. He did eat more cheesecake (Oreo this time) for
lunch and his therapies went well. We did go outside for a while, but it was so
windy today that I was worried about his eyes so we came back in rather quickly.
He has been blinking quite frequently, but not enough for me to stop worrying
about dry eyes.

I am going to just catch up on some of the questions since there really isn’t
anything else for me to say.

Brenda (and anyone else that wants to know where to send stuff) - send it all to
Kevin. The hotel hasn’t been overly accommodating with the mail, lol. And he
loves it when they bring him letters.

Debbie - Kevin does have a laptop that we watch movies on and so far he can only have soft foods. Like cheesecake and puddings and stuff. Tomorrow we are making him macaroni and cheese though. It's a soft solid.

Lorraine and Rick - we did receive the pics of Howard the Duck! We laughed our
butts off! It was so nice of you guys to send them to us and it was nice to see
the family photos! And of course we remember you guys! I met a lot of wonderful
people while owning that store!

Lori - please scrapbook a page for me, lol. I miss time for hobbies. I started www.scrapmuse.com years ago (but then sold it). I had just gotten back into scrapping about 6 months before the incident.

Lori from PGH - there is a Browns fan nurse here and every time she comes into Kevin's room she says "Go Browns". Well, Kevin makes all these faces at her and shoos her from the room. It is so funny. She does it just to rile him and it works every time. I can't remember if he was a die hard fan, but I know Breezy is, lol.

I'm gonna quit now and finish watching a movie I started last night. Goodnight all!

Tuesday, September 23, 2008

Day 115 - Sept 23, 2008

Oh my gosh! Y'all will not believe what Kevin did today!!

First, you have to watch this video. It was filmed by Moe the night before Kevin left for Basic Training. We had just went to Olive Garden for Kev's last dinner and were on the way home from Pittsburgh and if you have seen the movie "Wayne's World" - you will understand. The poor guy in the center is Moe's son, Mathew. Breezy on left and Kev on right.

video

So anyway, now that you see how goofy we are, lol - all the kids were visiting tonight (Breezy, Anthony, Matt, Chrissy and Drew) and they put the same song on the stereo. Well...didn't Kevin start singing (making noises) right along with the CD and he was even playing air guitar and making hand notions like he did in the video. And even more - he head banged at the appropriate part too! The kids called me in disbelief and when I got back to the hospital - Kevin did it for me too! I am telling you - he is truly still my son! I was even able to look at pictures of Kevin tonight from before the Army and I didn't even cry! That's because I am not feeling the loss anymore - he is still here! And I gotta be honest - I didn't think I would ever see him again. I really didn't!

Man, I love my kids!

And in further news...Kevin does see and know his colors. We tested this out today. I know it's common for TBI patients to see in black and white, but Kevin was able to pick out the correct colors each time he was asked.

He also knows his numbers, but he can't seem to get any letters or words right. He is able to pick out pictures now when we ask him to, so great strides have been made.

And today he ate Turtle cheesecake for lunch. And boy was he mad at the speech pathologist when she took it away from him. The poor woman...he is always so frustrated with her. I guess that's normal for her though.

And rest assured - our perv roommate was removed today. I believe they actually took him to the psych ward. I do feel bad for him, but I just won't risk my son or myself out of pity for the guy. Nope. He is GONE! (and I loved the geriatric strip tease comment too, lol)

So now I will get to a few more questions:

Debbie, Kevin can have anything sent to him at the address listed at the top of the page. He gets excited when he gets a letter so he will love a care package. You would have laughed to see his face light up the other day when an organization brought in a gift bag full of little things. He pulled everything out and looked it all over. And please have Josh tell everyone "HI" from Kevin!

Linda, you asked about why he has pain on the tilt table...I think it's just his not having used any of those muscles for 4 months now. He has to start all over and it's even harder when his right side doesn't work as it should.

We did find out today that Kev's right shoulder is starting to separate. We will be starting some kind of electro thing tomorrow. I will let y'all know what it's all about then.

Brenda, I didn't actually think about the circles being bigger on the dominoes. If you don't mind - send them along. We would really appreciate it!

Holee, we did try typing today with Kevin, but he just can't comprehend what he is seeing in terms of letters. I am hoping that will change down the road, but it's nothing I am going to be too concerned about yet.

Larry, I am so glad your son returned to Italy safely. I hope he (and all the rest of our guys/gals) remains safe and sound!

And that sums up today's post. I am whooped and going to bed early.

Day 114 - Sept 22, 2008

Wow! What an interesting day! Kevin's roommate moved to another room the other day and we got a new person in today. Let me tell you - I am very sympathetic to the patients here - but not enough to let this one stay in my son's room! I can say, both Kevin and I were very nervous all night tonight.

This man is probably in his late sixties or so and he definitely is very confused. He kept coming over to Kevin's side of the room and rooting through his stuff and one time he walked up to Kevin and started lecturing him about using only one spray of deodorant, not two, because this is his house and he makes the rules. He was very forceful about it and I could already see that this wasn't going to work out. Poor Kev's eyes were bugging out of his face! So next I was doing something and the guy said to me "hey baby, turn around here and I'll show you a big surprise". Well I could tell by the tone of his voice what his surprise meant so I just ignored him and next thing I know, his pajama bottoms hit me in the back. Meanwhile he is making lewd comments to me. Needless to say I called someone in to sit with Kevin and marched myself right out and demanded him out of my son's room tonight! Of course it didn't happen as it was too late at night, but they drugged the guy to make him sleep and told me he would be moved first thing in the morning. Let me tell you - he better be gone before I get there or heads will freakin' roll! That's just crazy, I tell ya! Kevin was really nervous and he kept fighting going to sleep. I think he was scared to. I had the one to one (the person that sits with him while we aren't there) come in and assure him that she would keep the guy away from us. That seemed to calm Kevin down enough for him to go to sleep. Unbelievable, huh?

Other than that, we had a great day! It first started with Kevin eating a whole helping of mashed potatoes with gravy and then for dessert I had bought him some strawberry cheesecake from The Cheesecake Factory. He ate about 3/4 of that too! Me and Breezy were calling him piggy and making snorting noises and I had to laugh cause I was eating what was left of his cheesecake once he was done and he turned to me and snorted! The little shit! I so love seeing that sparkle of laughter in his eyes again!

After lunch, we put him on the tilt table to make him stand up. The physical therapist had no intention of allowing him to fully stand, but he was so angry that she wouldn't do it that she gave in (he was really flipping out, lol) and he literally stood up the whole way. He was so determined and I have to say, he did it! And he even tried to step off, but he was strapped to the table. But sadly, within minutes he turned white as a ghost and broke out into a sweat and was close to vomiting. It was just so hard for him to do and although I am proud of him for doing it, it was too soon. But, as mentioned before, he is just like his momma, lol. Impatient as hell!

After he took a nap, we then put him in the chair and we went outside again. There is an 8 lane street that runs adjacent to the hospital and across the street is the University of South Florida. Well, they have a walkway that goes from the hospital, over the street and to the college and we escaped hospital grounds for the first time in 4 months (not counting our flight to Tampa). We went over to the college and poked around a bit (it's a college with a cancer center attached so it must be some sort of medical school). We actually sat in his chair over the street and watched all the traffic for quite a while. I think in a couple of days I am going to bring him down to my house for a while. I guess he can do that here. We can actually even walk him over to Wal-Mart, but I'm not ready for that. It's just a little too far for comfort and it's also not the safest of neighborhoods.

So all in all, it really was a good day. If we can just get rid of the perv, things should get back to normal.

I also know that I still have questions in my inbox that need answered, but I am going to wait until tomorrow night. It's 2:30am and I need to get back up in a few hours to go back over to the hospital.

Sunday, September 21, 2008

Day 113 - Sept 21, 2008

I caught him! I did! He was making sure I wasn't looking and I could hear him breathing really hard. I was wondering what he was doing, but I was looking through the slit in my eye (he thought I was sleeping) and next thing I knew - he was staring at his right arm and he did it! He moved it! You shoulda seen the concentration on his face! I think he is afraid of failure so he is practicing when no one is looking and I am just going to let him continue doing that. He literally lifted his arm about 4 inches off the bed. I was amazed! And to beat all - he actually did it 3 times within 5 minutes or so. It appears to be a lot of work, and that makes me all the more proud of him!

So there was a bit of change today. Anthony and Matt stayed with Kevin for about 4 or 5 hours this afternoon while Breezy and I went to the beach! We drove out to Clearwater and just enjoyed the sun, sand and water! It was a nice little respite for us.

And I am also going to cut this short tonight. Kev actually fell asleep before midnight for the first time in a long time and I want to try to get some of my stuff unpacked. I also need to eat dinner yet. So I will get to some more questions/answers hopefully tomorrow night.

Day 112 - Sept 20, 2008

Kevin was in fine form all day today, lol. He was just joking and carrying on so much. Today he would fake cry to get attention. Him and Breezy were even playfully fighting and they also arm wrestled. My nephew Anthony and his friend Matt made it down to visit (and they brought my car - yay!) and Kevin was so hamming it up in front of them. I don't know if we have ever laughed as hard as we did today.

We did go outside today too, but it was kinda stormy and a little too breezy so we didn't stay out long.

And I noticed over the last few days that Kevin has been blinking his eyes quite often throughout the day. This is a really big deal! I noticed the other night that he was sleeping with his eyes halfway closed too. These two things are so exciting!

Now because I haven't had time to answer any of the questions lately, I have a huge amount of them in my inbox. I am going to get to some of them tonight and some of them tomorrow night.

First, someone asked if they could print the picture of Kevin off to show their family. I guess I don't have a problem with that if it is used with dignity. I do not allow this picture (or any others) to be posted on any other websites though. If someone online wants to see his pics, they will have to link to my blog (not link to the picture).

The same person also mentioned that Tim should come more often so Kevin would understand he will come back, but Tim tells us that he just can't come anymore than he is. To use his words from last week - he has "family matters" he needs to deal with (which btw, I did have to remind him that Kevin should be considered family too and it really wasn't appropriate for him to say that in front of Kev). Oh, and he also has a job and bills to pay. Breezy and I both said to each other that he could have the cardboard box on the lot next to ours, but we think we are the only ones that will see the humor in that comment, lol. (you gotta laugh about not having a home, right?)

Cathy asked if we have shown Kevin any of the cards that have been sent to him. We did show him a ton of them while he was in Texas, but they just got here two days ago from there and I haven't unpacked yet to take all of them to him. He does get mail here now and he looks at every card and I read him what's inside.

Mikki - thanks for the offer of your home for Breezy when she goes to the game, but she needs to come back that night. The person that is going with her has to be at the airport early the next day.

Someone asked what happened to day 105's post? It's there now. It was the strangest thing in that it was showing up as a draft and not a post. Yet y'all had seen the picture so I have no idea what that was about...

Brenda, you asked about foam dominoes and giant checkers - Kevin can actually use normal sized stuff. He has his fine motor skills with his left hand and can even put the cap back on the toothpaste. Thanks for the offer, though!

Phew! That's enough for tonight. I will try to get the rest answered tomorrow night.

Saturday, September 20, 2008

Day 111 - Sept 19, 2008

I am actually not going to write much tonight. I am just too wiped out.

I will say that we did get moved to a larger room, but we are now sharing with someone. I do prefer a single room, but am trying to look at this as a step forward.

And my niece Chrissy and her boyfriend Drew came over to visit. And even though they only live 20 mins away in St Pete - they are sleeping over with Breezy. I'm glad - she needs the companionship.

So I will write more tomorrow night. Goodnight all!

Friday, September 19, 2008

Day 110 - Sept 18, 2008

A couple of great things happened today, the first being that Kevin played the card game "War" and was able to play it without any help. He knew when he won the hand and he knew when he lost. It has made me wonder if maybe he was mad that the therapist was 'talking down' to him with the flash cards? I am not sure, but if you know pretty much everything and someone asks you a dumb question thinking you don't know the answer, I suppose one could get mad. I need to test the theory out tomorrow. We just didn't have time tonight.

We also gave him a new cushion on his chair and he was able to sit for about 2 hours today. We even went outside and watched all of the traffic for a while and for a totally new experience...Kevin went shopping! They have a small little store in the hospital and we wheeled Kev right on in there. You could tell he was excited so we will go back soon. Stupid me didn't have my purse with me so we couldn't buy anything. I just never thought about him doing something like this! Great, huh?

And he ate almost a whole pudding pack today. He also drank quite a bit of the powerade as well and he is able to feed himself with the spoon. We have to hold him back because he wants normal man sized bites and we have to have small ones, but he is still doing it himself.

One thing that I found very sad today though was when I asked him to help me exercise his right arm. He picked it up using his left hand and looked at me with this look on his face and then just dropped it. It was very obvious that he was saying "Don't be stupid, mom. It's dead". I gave him yet another pep talk and I sure hope it doesn't bite me in the butt. I told him that it would work again and that it would just take time. Maybe I shouldn't have said that. I can't say for sure it will work.

And finally! Yes finally! Our stuff arrived from Texas via Pennsylvania! Yay - we now have clothes!

Thursday, September 18, 2008

Day 109 - Sept 17, 2008

Today we had Kevin sit on the edge of the bed for the very first time. Sounds easy, huh? Boy, let me tell you - it wasn't. It took close to 15 minutes to get his legs spun around so that they were hanging off the edge of the bed and he actually was leaning back against a physical therapist because he is in no way strong enough to do this on his own yet. I have to say, it was rough because Kevin was also in a lot of pain and I am still figuring on it being that right hip. We are awaiting the x-ray results to know for sure. So it took that long to put him in the position and he only sat that way for maybe 4 minutes. He just couldn't handle it any longer.

He also ate some more pudding and had some water to drink today. I am hoping by next week I can give him water myself at different times of the day. As of right now, only the speech therapist can give him food/drink.

I was also quite saddened by Kevin not understanding some picture flashcards. I think I had fooled myself into believing that he actually is mentally 'all there'. But today I realized that he isn't - at least not yet. When we showed him three cards and asked him to point out the spoon, he couldn't do it. He got very upset and we had to abandon the project.

I guess I just don't understand how someone can choose the movie he wants to watch out of a pile of 8 or so, watch it the whole way through - laughing at the appropriate parts - and then not know what a picture of a spoon is. How is that possible? It just makes no sense to me.

And now I need to catch up on some questions. Someone asked why Kevin had been agitated. I truly wondered if it was because Tim left. He left Saturday while Kevin was sleeping and the agitation started the next day. I can't say for sure as Kev can't talk, but the timing is right. And there were no other changes that I am aware of.

I know a few people have mentioned the alphabet letters and we are working on it. I will be honest and say I don't think it's going to work yet. When we give Kevin a pen and paper, he only scribbles. If he could spell, I would think he could write (even if it is sloppy due to the left handedness). From what I understand, the writing and language section of the brain are the same and that section was removed.

Jessica asked if Breezy and I were going to counseling and it's something we are in need of. We just haven't gotten around to it yet. Soon, I hope...

And Breezy had the option of staying with me, it's just very rough for two people to live in one tiny bedroom.

And Gretchen - I would so love for you to come visit us in Tampa. Hey - it's not THAT far from Paris, lol! And did you get my email with my phone number?

Gonna close out for the night. Kev slept from 4-9pm and then didn't go back to sleep until 1am. I sure hope this isn't a pattern. I don't get to take the 5 hour naps when he does and it's exhausting being there that late...

Tuesday, September 16, 2008

Day 108 - Sept 16, 2008

Today was kinda a rough day again. Kevin and I are both very frustrated because he wants to say something and I just can't figure out what it is. It sounds funny to say this, but all day long he just says "Hi". I know it's the only word he knows and believe me, he has it down pat. But he gets mad trying to tell me something and just screams "HI, HI, HI, HI, HI". Tonight, we both just sat and cried together because I just don't know what he wants to say. It is just so damn hard to know how desperate he is to say something and nothing I guess is it.

And I don't want to make it sound like we can't communicate at all - we can for the most part. Tonight I lay my head down on his side rail and almost drifted off to sleep. Kevin must have been watching me because he made noises until I looked up at him and he then made the hand motion for me to go. I asked if he wanted me to go home and he shook his head yes. I told him I was waiting for him to go to sleep and he turned his tv off and shooed me again. I understood what he meant. And I love him all the more for knowing I was tired and sending me home to bed.

So we really can communicate - just not always. I guess patience will see us through, hopefully anyway.

Speaking of patience, we put him on the tilt table again and he was determined to fully stand up. Unfortunately, he was in a lot of pain when we got close to him standing up and we didn't want to strain the ankle that just healed from its break. Boy, was he mad though that we wouldn't take it the whole way. The physical therapist said "Patience, Kev" and I said "Yeah, that's the problem. This family has never been patient. We are the 'let's get it done now' sort". Kevin just smirked, basically telling the therapist that that remark is so true.

And today...Breezy and I took a break for a few hours. I am sorry to say that I must have been more frustrated than I realized and I was taking it out on her. And she is feeling bereft with the entire situation and having absolutely no one here to talk to or hang out with. So we had one of our quarterly fights and decided to blow off some steam. We actually went to the Hard Rock and played the slots for about 2 hours or so. I lost about $20 and she won about $100. She is taking her winnings (plus a little bit more) and going to the Steelers game in Jacksonville on Oct 5th. You should see her walk around the hospital on game days. She is all decked out in Steelers garb from her earrings down to her socks, lol.

And to end my post tonight, I would like to ask everyone to keep Joel in their thoughts for a while. He is very sick again. I believe his shunt isn't working correctly and they are thinking he has another blood infection. They had to re-intubate him today and they might be removing the shunt soon. This means they won't be coming to Tampa this week as planned. I am so saddened by this. Please just keep them in your thoughts. They need to get here because this place is just awesome and I just bet Joel will do just as well as Kevin!

Day 107 - Sept 15, 2008

I am not going to post much tonight. It's already 1:00 in the morning and I just got home from the hospital. Kevin has been exceedingly restless. It is most painful to watch and I actually had them medicate him so that he could rest. It's something they do often with brain injured patients, but I (and my kids) have always been against unnecessary medications so I don't typically allow it. I watched him constantly move around for close to 5 hours though. Mind you, he is not in pain - just restless. I hate it when he is like this.

So I will write more tomorrow night. I am just too tired tonight...

Sunday, September 14, 2008

Day 106 - Sept 14, 2008

Kevin was very restless today. That makes it hard on all of us - it's just so exhausting watching him go up the bed, then down the bed. I feel so bad for him when he's like this.

But, we had a couple of great things happen again today! First, he now handles the remote for the tv on his own. It's so nice that he can find what he wants to watch and flip through the channels himself. It was so funny because we have been trying to show him how to use it since yesterday and he just wasn't interested. Well today, when the show he was watching was over, he just picked up the remote and just used it like he has always done. Amazing, huh?

He also started shaking/nodding his head for yes and no. I am not 100% sure he knows what he is saying, but it really appears that he does. I will test it out a little more tomorrow as he just wasn't in the best of moods today.

And he is learning another word. We have him saying "thank you" now. Actually, he says "thank" and it follows with a word that is sounding more and more like "you", but it's just not right yet. That's ok though - we have plenty of time, right? I mean, who woulda thought we would come this far in just 2 or 3 days? I just can't wait for the speech pathologist to hear him say "HI" tomorrow. She is gonna be so shocked!

And to change the subject - Holee, I just have to share that Breezy now sleeps with the lights on, lol. There are just too many bugs at the hotel and once you wrote in one of your posts that you used to do that to keep them at bay, she latched on to the idea. I have to kinda laugh, truthfully. Poor thing, lol.

Oh, and you had asked if Kevin still wears the goggles and gets the drops. He does get a lubricant put in his eyes every hour but he refuses to wear the goggles. He takes them off and throws them across the room so we don't even try anymore. He definitely knows what he wants, lol.

Saturday, September 13, 2008

Day 105 - Sept 13, 2008 - pic included

This has been another good day. Today Kevin laughed for hours with me and Breezy. It was almost just like normal family times. The only way it could have been better was if Kevin was talking. Honestly - he keeps up with everything me and Breezy say. He comprehends nearly everything and let me say, we don't slow our speech down for him at all. We were just cracking jokes and he was laughing right along with us. Then Breezy started making faces and Kevin even made a few back at her. He was also tricking us into doing things and just generally being the jokester he always was. At one point, he even put his hand up at the side of his face so that he didn't have to look at Breezy cause she was being a dork. I could honestly hear him saying that to her too - " I am not even looking at you because you are a dork!". It was just his way of playing with her. I have to say, it's sure nice seeing my son and daughter laugh together. Y'all just can't imagine how awesome Breezy was today (and everyday really). She was just plain being silly to keep him smiling and laughing. It's not only good for him mentally, but we need to start working those facial muscles and his lips. They were burned and haven't really been used at all for nearly 3 months. We have some work to do for sure. Just imagine a stroke patient if you will - where their face doesn't quite move the way it should.

Kevin also played catch today with the doctor. He both threw and caught the ball of gauze. And at one point the gauze started unrolling and he rolled it right back up. I had to laugh too, because he rolled it crooked and when he realized it, he unrolled it and fixed it so that it was done correctly (can you say obsessive compulsive disorder? He gets that from his mom, LOL)

He also learned how to do the thumbs up gesture, but I am not sure if he is aware of what it means. That is about the only thing I am seeing wrong mentally at this point - he can't make any decisions and can't answer questions. So if you ask him 'do you want to watch this?' he just looks at you. Although truthfully, even that is changing. Tonight he made a motion to Breezy to turn the channel when she would stop on one he didn't want.

I did have to laugh too, because he watched 2 episodes of 'Burn Notice' tonight and would not even acknowledge us unless commercials were on. He literally put his hand up to shut us up if we tried to talk while the show was on.

Kevin is also using a kleenex to wipe his nose now. He had a little sniffle today and Breezy just handed him a tissue and he used it with very little encouragement from her.

So now, I am going to share a picture of Kevin with you. This is a picture of what he looks like now. A picture of him brushing his teeth. I am coming at him on his good side - the side where his skull is intact and basically his facial skin is starting to look really good. I am just not ready to show you the other side. Anyway, you can see that he is mostly just a dark pink color and it may be noticeable that his eyes are still puffy and discolored from the grafts. He has to wear the gloves for 23 hours a day for at least a year. He has gloves, sleeves and leggings that he will have to wear. And truthfully, once his feeding tube comes out he will need to wear compression garments on his chest/back as well. His left pinkie is splinted yet as we had some tendon showing up until recently. You will notice he doesn't have a full head of hair. We don't know what that will end up being like. It's partly due to the burns and partly due to the medications he is on. His eyebrows still need to fully grow back too (sections are there). They did once already (maybe twice?), but they keep falling out too. The bandage on his neck is from his trach removal and you will notice everything is padded. He just moves around so much and we have to protect the 'good' part of his brain that is completely vulnerable due to his skull being removed. So anyway, I think I explained everything and if not - feel free to ask. And now...here he is:

Friday, September 12, 2008

Day 104 - Sept 12, 2008

This was by far probably the most amazing day we have had yet to date! We did so many things today that my head is just spinning!!

First, Kevin ate pudding today! And he even would take the spoon from the therapist's hand and feed himself. I would say he ate about 1/3 of one of one of those pudding packs. And he even used a napkin to wipe his lips when he needed to.

He also automatically covers his mouth when he yawns now. I guess that is just instinctual, lol!

And today, he got on the tilt table. A tilt table is a table that will tilt upwards until the person that is strapped to it is standing up. Due to Kevin's ankle having been fractured, we have not put any type of weight on that leg until today. Needless to say, the right leg hasn't had any weight either. But today, we had him standing nearly straight up. We kept him at an angle, but only because it's been 3 1/2 months since he has bore (is that the right word?) any weight on either leg. I am pleased to say that he handled this extremely well.

I also gave Kev his dog tags this morning and he kept putting them up in front of his face and then cradling them to his chest. And once I saw that he seemed to understand what was really going on today, I gave him his wallet. His eyes lit up like a Christmas Tree. He flipped it around on his stomach to get it open and held it up to his face to see what was in it. I pulled out all of his cash and cards and he reached for the cash first (he's not dumb, lol). I shit you not - he used his thumb and fingers to spread the cash out in his hand and I honestly think he was counting it. We then went through all of the cards and we talked and I made a comment about his military ID looking like a convict and he actually smirked at me. And when I came across a fake NY driver's license with Al Pacino's face on it, I joked about being mad for him having a fake id and he truly grinned. It was so hilarous! And so wonderful to see! Anyway, when I went to put everything away, he put his hand up and stopped me. He pulled the money out of the pile and tried to give it to me! I told him "NO! I'm not taking your money" and he just shook it at me! We then had a long discussion about money and I do believe he understood everything.

And I mean everything! I told him it was time for him to brush his own teeth and handed him his tooth brush. The first time today, he tried but struggled. He got frustrated and quit. I gave him the "Don't get frustrated" speech and when I gave him the toothbrush again tonight - he brushed exactly right. He rubbed back and forth and even did his back teeth and his tongue. Unbelievable. And once he was done, I had him put the toothbrush back in it's holder and put the lid on. The first time, he didn't get the lid on quite right and told him 'no way, buddy. Get it on there right' and he did!

And Breezy gave him a pen and paper tonight. He did a lot of scribbling and it went on way longer than it did when we used the dry erase board.

And for the pièce de résistance: My son said his first word tonight!!!!!

We have been trying to get him to say "HI" for a couple of days now, but we haven't been trying real hard. Tonight I came back after dinner and we really worked on it. After a while, he said it real quietly a few times and we started calling everyone we could call. As time was going on, he was getting louder and stronger with it and I wish y'all could have seen the look on his face when he shouted "HI". I think he surprised himself and we all started jumping and smiling and laughing and the look of pride on Kevin's face was so amazingly wonderful! He was honestly grinning from ear to ear right along with us! It was all me and Breezy could do not to start crying. I just can't believe that Kevin can talk! They told me he never would! And yes, I know it's only one word, but if he can do one - he will do them all! I believe that!

Isn't this all just so amazing? I kept thinking he was in there and we needed to just bring him out, but today was honestly more than I could have ever hoped for! If he keeps up at this rate - we will be home next month, lol. (and yes - that is an exaggeration - grin)

Thursday, September 11, 2008

Day 103 - Sept 11, 2008

Kevin finally had his trach removed today! Hurray!! This is just one more step toward recovery!

And he didn't have a fever at all today so we are in the clear on that. Boy, I was so worried about infection! I guess it was just a fluke.

Kevin isn't tolerating the chair very well here though. His blood pressure goes through the roof each time he is in it. I know he has some new bone growth in his right hip so I am wondering if that is the problem. I talked to the doc about it tonight so we are going to look into that further tomorrow.

We were also using these plastic cones to get Kevin to take one out of my hand and put it on top of a pile of them in the therapist's hand. We move my hand and the therapist's hands to different locations to check for depth perception and just general arm usage. He was able to do it very well, he must have put at least 30 on the pile no matter where we moved it to, but the therapist does believe that Kevin has double vision in his right eye. He hasn't been tested, but she believes it to be true.

And unfortunately we didn't get to eat today either. The Speech Pathologist was in meetings all day so it was a 'no go'. What a bummer! Tomorrow though, surely...

Oh - and you will never believe where all of our stuff was sent to from TX? It was supposed to have been shipped here and you guessed it - it is now in my apartment in PA! Whole lotta good that's gonna do us in Florida, huh?

Going to bed now. I will answer questions tomorrow, although I do want to tell Brenda that I did get the cat you sent. That is the cutest thing!

Wednesday, September 10, 2008

Day 102 - Sept 10, 2008

I think Kevin is getting sick. He has a slight temp today and he wasn't in a very good mood at all throughout most of the day. He mostly slept so we didn't get to eat or drink anything and we didn't get the trach removed either. We also didn't get in the chair. Please, please don't let this be an infection! We have been doing so well...

Because the day was like it was, I am just going to answer some questions and then go to bed early tonight. I am still so very tired.

Someone asked if therapists are being lumped in with the docs when I mention them and the answer is yes. So far we have a list of about 12 therapists, docs, surgeons, dietitians, etc. I will give a complete list after we have our first family meeting in a week or so.

Haleigh - Please go give Moe your phone number and I will call you. I just don't have time to keep up with my email as it is and am afraid it will take too long to go back and forth in that manner. I am sure Kevin will be excited to learn that he is being featured in the school newspaper!

Donna - I tried to read Bleachers but just couldn't do it. I don't want to read about football from Grisham - I want law stories, lol. As to the letters, my friend Joanie from here in Florida is sending some down. Thanks so much for the offer though!

Debbie - if that was you posting from armyparents, tell Josh that Kevin is doing so much better than when he visited us in TX! I know that Kevin will want to thank Josh himself someday for 'commandeering' that ambulance on the scene, and I do believe Kevin will say the words eventually!

Mikki - a long time ago you mentioned a form of communication that you use with Cole - I have just never gotten around to calling you and have so wanted to. I promise to do so soon!

I think I got everyone's questions. If I missed any, please send them again. Goodnight everyone!

Tuesday, September 9, 2008

Day 101 - Sept 9, 2008

Another great day! Today Kevin drank about 2 ounces of Powerade. It was so funny because Breezy poured it into a cup and I was going to use the spoon to give him sips and he pushed it away at first. I was surprised, but then he reached his arm out and grabbed the bottle from Breezy and brought it to his lips to take his own drink! I had to grab it real fast so that he didn't pour it down his throat - he is just not steady enough or ready enough to drink that much that fast. Oh - and then when I talked to the speech pathologist about something, Kevin tapped my arm and made the motion to 'come here' using his hands - meaning give me more right now! I was trying so hard not to laugh! But seriously, he was so upset when we had to call a halt to his drinking it. We didn't want to give him too much yet because we weren't sure how well he would tolerate it. I can happily say that there were no problems and believe it or not, his tongue is still blue almost 9 hours later, lol.

And guess what tomorrow brings? Applesauce! I can't wait!! (and to the person who works SP - the pathologist is always there when we do these things. I would never risk my son by doing something he is not ready to do - and I am not knowledgeable enough to know when he is fully ready for these changes)

Another great thing was that he was doing physical therapy and the nurse told him to do 5 leg lifts and he did five and only five on his own. Meaning, she didn't count to five - he did it himself. I guess he can still count, huh?

And I do believe his trach is coming out tomorrow. Yay!! Neurosurgery finally gave the ok, so respiratory will come up at some point and remove it. I am so looking forward to that!

That pretty much sums up our day. I guess Tim is coming tomorrow. I had to give authorization for the Army to pay for his flight and his lodging as I am Kevin's NMA (non-medical attendant). I am second guessing my decision because I am worried about Kevin having a setback. I wish Tim would think about how hard this would have to be on Kevin due to the fact that he can't voice his thoughts or emotions. It's just not really the right time. It's been frustrating enough for Kev and now this. If Tim would just realize what Breezy is feeling, he might understand how detrimental this trip could be to Kevin. I just don't understand why he thinks everyone wants to welcome him back with open arms. I thought he 'got it' when I told him last time exactly how devastating his abandonment was through the years for both his kids. But I guess some people just don't care about what others feel or want.

Oh well, I did allow him to come just in case Kevin wants him here, but I will be keeping a close eye on the situation. Nobody, and I mean NOBODY, is going to mentally or physically harm either of my kids if I can help it ever again. And this time - I am stronger. I am bitchier. And I can help it.

Phew! That felt good!

But, to end on a positive note - Kevin really did have another spectacular day!

And I will get to everyone's questions tomorrow. I have written enough for tonight, lol.

Monday, September 8, 2008

Day 100 - Sept 8, 2008

Oh what a wonderful day!

Today...on day 100...Kevin had his first drink of Pepsi! We tried an ice cube first, but he spit it right out. We then tried water and he didn't really care for it, but as soon as we brought the cola out - he drank 8 sips or more. We used a spoon and he loved it!

He also sat in a chair for about an hour today.

And he moved his RIGHT leg up and down on his own during therapy! I just couldn't believe it when I saw it. He literally moved it on his own! He is also starting to relax his right arm more and more as well.

He is also trying desperately to talk and he is actually "talking", we just don't understand the words yet! He seems to have latched on to the "TH" sound and uses it frequently. He talked to a bunch of my family on the phone and he held it again and was making sounds each time someone stopped speaking. I think he really understands some of what is being said and tries to make appropriate responses.

He also cried today because Breezy was crying. She was crying out of happiness at everything he was doing. He just didn't understand that. He kept looking at her and crying and he was so visibly upset. It was hard to see - but it's still another sign of improvement and I am looking at it just like that. We now have to be extra careful not to show too much emotion - something very difficult for 2 women, lol.

Then he allowed me to brush his teeth and the roof of his mouth (which had 1/4 inch of dried phlegm stuck to it)! This is something he never allows anyone to do. I told him that a dentist was coming in the morning and they were going to put him to sleep to peel it off the roof of his mouth and clean his teeth unless he allowed me to get it out and he unbelievably let me do it. Actually - he helped. He was taking his finger and inserting it into his mouth and trying to scrape it off. I tell ya - what a wonderful day.

And the very best part of today? He has been hugging all day and when I tried to teach him to blow a kiss - he put his arm around my neck and pulled my mouth down to his and kissed me right on the lips! I didn't understand what he was trying to do for a moment. I thought he just wanted a hug at first and it finally dawned on me what he wanted. I was so scared to actually touch my lips to his due to contact and the passing of germs, but I couldn't not do it. I must say - my heart just melted right then and there.

It really was a most exciting day!

So I want to just answer some of the questions. First, I want to say to Jodi and the rest of Andrew's family - maybe Andrew is with Kevin today on his very special day. Maybe that is why Kevin is doing so well? I don't know, but there's a reason things happen as they do, I firmly believe that. I so wish Andrew could still be with you though. And James with his family as well. And I remember how horrible it was to let Kevin's birthday come and go - I can only imagine what y'all are going through. My thoughts are, and always will be, with you! I love you guys!

To Jenny in Melbourne - I have to admit that I did wonder who was reading from Australia. I have many friends around the globe, but I don't think I know anyone from there, lol. It's just amazing how far and wide our little story has gone.

As to our address - we can't get mail at the Fisher House so please send all mail to the Clarion. Breezy is staying at the hotel for a while and I am staying here. You are right Holee, it isn't the nicest hotel I have ever been in, not by a long shot (although the pool is wonderful). I am actually surprised that Breezy is still there, lol. I guess any place is better than one little bedroom with your mom sleeping with you (grin).

Now I am going to curl up with John Grisham tonight. He's another favorite author of mine - at least his law stories are.

Here's hoping tomorrow shows even more improvement (or at least a continuation of what he did today - I am still so excited!!)

Sunday, September 7, 2008

Day 99 - Sept 7, 2008

I am not going to write much tonight. It's late and I am tired.

Nothing much happened anyway today. Kevin was in a better mood - he even gave me a hug when I was leaving. I usually wait to go home until he is sleeping, but he had taken a long nap while I went to dinner and I couldn't stay awake any longer myself. It's ok because he has someone that sits in his room with him 24/7 so he has someone to talk to him.

That's really about it so I am going to cut this one short. Hopefully things will start rolling tomorrow in regards to therapy. I just can't wait to see what they do!

Saturday, September 6, 2008

Day 98 - Sept 6, 2008

It was a nice, slow day today. Finally. I think I love weekends, lol.

Although...I was awakened at 7am due to the fire alarm going off at the house. I can honestly say that I have never been involved in a 'real' fire alarm situation. I hope I never am again - but I am told it happens frequently here.

Speaking of here, Susan - you asked about our living situation. We live in a beautiful house that has 21 (I think) bedroom/bath suites and a 'community' kitchen, dining area, living area and den. It is very upscale and it is only for wounded warriors/vets and their families. It's called "The Fisher House". It's kinda weird for me because I am a very private person, but I am getting to know everyone here and from what I am seeing, we are all here for the brain trauma unit. This means that I can just ask anything and someone here will know the answer. The only other downer is that you can't take any food to your bedroom. That's a bummer because I like to eat popcorn and drink Pepsi when I am watching a movie, but no can do. I suppose I should look at it as being good for the diet, eh?

Paula, I have wanted to buy those plastic alphabets for a while now, but at this point I don't have a car to go anywhere. My car will be here in a couple of weeks so I will get them then.

To both Paula and Susan - say hi to everyone at work for me!

So back to Kevin - one thing that was kinda exciting today was that he was really pissed at me again (surprise! haha - he HATES me brushing his teeth) and he was so angry that he almost said some words. I heard two new sounds - the TH sound and the letter D sound. I know this is such a little thing, but all of this points to him possibly being able to speak again! I could just tell he was swearing at me too, lol. I told him to go ahead and curse me up one side and down the other. It's not like I don't feel like doing it sometimes!

He is also giving everyone high fives now. Breezy taught him to do this weeks ago and he continually does it for the docs. It's just amazing how much more alert he is. And when you say his name his eyes connect with yours for a longer period of time now. We are progressing, and we still haven't really started rehab yet. I am told we will meet with all of his docs this week (and every week thereafter) and go over a plan of action, where we all set realistic goals. I am really looking forward to that.

And I will say that so far, even with all the transfer problems, I am really liking the set up here. I love how they include the family and listen to everything we have to say. I never understood why the TX hospital shut us out. I am just glad that I was pushy and wanted to understand everything or we would have been in some deeper shit than we already were when we transferred. Oh well, water under the bridge, right?

Friday, September 5, 2008

Day 97 - Sept 5, 2008

Today I pretty much crashed. I came home for a nap at about 2:30 and slept for 4 hours until Breezy woke me and I decided to just stay home and take care of some business (laundry and unpacking) and try to catch up on some sleep. I hate leaving him for this length of time, but I am just so exhausted that I know I need to sleep or it will be worse in a few days.

They ended up not being able to do the swallow study today because Kevin was vomiting all morning. They changed his type of food last night to one with more calories (his food is just like baby formula) and it doesn't seem like he is able to handle it. They put it back to what they have been giving him and he seems to be tolerating it well enough. I know we need something with more calories so we are going to have to figure out what he can tolerate. He is down to 112 pounds and being that he is just shy of 6 feet tall, that tells you how thin he is.

I put my foot down and we got his compression garments on for his burns today. His body was starting to 'tattoo' (where the burns turn purple and red and are raised up from his skin, kinda puffy like - and it can be permanent if the clothing is not left on 23 hours a day). We also had a company come in and measure him for permanent clothing instead of temporary 'isotoner glove like' stuff. It took almost 2 hours to get all of the measurements because the clothes are taylor made to compress his skin. We already had some of the clothes for his arms and hands, but one of the nurses threw some of it out not realizing it was clothing.

That pretty much covers the day so I am going to end with answering some questions from the comments.

Kevin - you asked if he is playing any games and so far he really isn't. They haven't done much with him this week as they are all still getting to know his situation. You also asked about the tv and his preferences. I can't say he's had much time to watch tv this week, but as soon as he heard the theme music for the show "Cops" - his eyes got big. I left it on and he appeared to watch it. I really wish they had some music stations here, but they don't. I need to take his cd player tomorrow - I was trying to wait until we get him to his permanent room but it's taking too long.

You also mentioned his frustration level at not being able to communicate. I can't imagine it. When I think about him not being able to talk or convey what he feels - it breaks my heart. I think it would literally drive me mad. I will say though that he has no trouble telling us to back off, but there is no way to tell us much else. He does lift his hand in the classic "I don't know" gesture when he doesn't understand us and it's also obvious when he is frustrated - he starts crying and shakes his left hand like you do when no one will listen to you. I can only hope that someday he can communicate with us fully. It will be the worst thing if he never can.

Christie - thanks for letting me know I messed up the date again, lol. I truly never know what day of the week it is or what the date is. I have to look every night when getting ready to post.

Jessica - you are exactly right. I pretty much lose control if I think about the son that I had. The funny kid that always was smiling and joking and carrying on. If I remember him like that - I cry. To get through my days, I have to pretend that I never had that son. I have to look at who I have now and see how far he has come in the last 3 months. That is the only way that I can keep going. ( I hope you are ok?)

Ya know - I never in a million years would have thought our lives would be like this. This is so not what I envisioned my kids' lives to be like. Or mine, to be honest. This, quite frankly, sucks!

(sorry everyone - it's just been a very emotional post)

And I updated our addresses. I put Kevin's on there too as he can get mail now.

Thursday, September 4, 2008

Day 96 - Sept 4, 2008

Yet another busy day. But lucky Kevin figured out something today, lol. My niece Chrissy and her boyfriend Drew came over tonight to visit and they (and Breezy) realized that Kevin would be wide awake and alert until someone came to the room. He would then roll his eyes up into his head and act like he was sleeping. As soon as the person would leave, he would slowly open his eyes back up and look around to make sure they were gone. If they were, he would start moving around like normal. Man, I sure wish I could play possum too!

So it was still busy, but we only saw maybe 25 docs or so today. Tomorrow ought to be it, at least until Monday. Things are usually quieter on the weekends, I guess.

We did get a shower today, thank goodness. And we had pretty much an all over body set of x-rays done. It took over an hour for all of them.

And the guardianship hearing went well. I will admit that I worried that Tim would try to step in, but he didn't. I think he knew he didn't really have a chance. But anyway, I started crying when they recited the decision at the end. It's hard to hear that your son is so incapacitated that he can't make any of his own decisions - even if you truly are living it day to day. I guess it's cause we always have ways to fake the day away.

Oh and before I forget - I was told yesterday that Kevin had also fractured his lumbar 1 (back). This was the first I heard of it and need to find out more info. Unfortunately the person that told me this was paged and we never were able to reconnect. I know it's nothing to worry about at this point, but still...

And we also got Kevin's IV removed. For the first time in 96 days, he has no IVs! Yay!! I believe they are coming tomorrow to begin the swallow study as well. Hopefully he can do it because then we can start to feed him food! I just can't wait to bring him ice cream or just anything with some flavor! Keep those fingers crossed, everyone!

Wednesday, September 3, 2008

Day 95 - Sept 3, 2008

Hmph! I thought yesterday was bad with the amount of docs! We were finally moved to the rehab floor and there were at least 45-50 people (docs, therapists, etc) that came in to see him just today. I can't even begin to tell you how tired I am, so I can only imagine what Kevin is feeling. I have to say that it better not be like that tomorrow or I am going to have to say something. It's just too much!

But I am glad we are finally where we need to be! Kevin needs a shower and he also needs to sit up in a chair. We also need to get these burns taken care of.

And to be honest - we need to get a set schedule going. I put in another 16 hours at the hospital today and I can't continue at this rate. And I am smart enough to know it. I know that tomorrow will be another long day, but maybe the next day I can let Breezy do a little more than I have been. I just knew all the docs needed to discuss his 'issues' and figured I should be there.

So on this note - I am going to bed. I have to be there at 8:30 and it's now after 1:00 am. Unfortunately, Kevin never filed to appoint me POA (power of attorney) so I have a court hearing via phone scheduled first thing in the morning for me to get guardianship. I can't pay his bills or make any decisions without it. Thank goodness it's not a video conference, lol. I am looking pretty haggard lately...

Tuesday, September 2, 2008

Day 94 - Sept 2, 2008

Wow - I have never seen so many doctors in one day in my life. Kevin had such a busy day and it tired us both out. We still haven't been moved to the 5th floor (rehab) as the docs still haven't cleared him, but hopefully tomorrow. In the meantime, I am just trying to get the lay of the land figured out and also trying to get all of the nurses trained for burns (it's nothing they deal with here). I had Kevin's room turned up to 80 and someone turned it back down to 60 overnight. Yikes! Burn victims can't get cold!

I am also concerned that he hasn't had any PT done since we got here and they don't want his compression clothing put on. I think I need to make a phone call to our burn doc and chat with him about what he needs. And Pam? If you are reading this - give me a call so we can discuss his physical therapy. I knew I should've put you in my suitcase!

I also met a few of the moms here tonight and although I have heard some real miracles, for the most part tonight was a very discouraging night. One woman has been here for 30 months. Her son lost all of the left side of his brain too and he still doesn't speak or anything (but he does make noise!). He has also had 2 cranioplasties done and both had to be removed. And he had 5 shunts removed due to infections. Aaargh! I suppose it's too much to hope that we don't have any of these problems?

I guess we all just need to keep that wish in our thoughts...

Oh - and Holee? There are actually raspberry chocolate chips. I always got them at the Spice Store in East Brady. I suppose a teaspoon of raspberry flavoring would work too. And I always use the Nestle Tollhouse recipe. Yummy!

Monday, September 1, 2008

Day 93 - Sept 1, 2008

To be honest, I am just too tired to post tonight. It's been a long couple of days as I am at the hospital longer than I was while in Texas. It's just exhausting.

But on a good note - my dinner was fantastic (if I do say so myself, lol).

So I will check in more tomorrow night. Nothing really happened today anyway as it was a holiday so it looks like everything will truly get started tomorrow. Will check in then.

PS: Jessica - Breezy actually got here before I did. She wasn't even given any time to pack. They called her and told her to leave immediately or she would miss her flight. So she was here at least 3 hours before us.