Day 170 - Nov 17, 2008

We had a really bad day today. It was so bad that Kev didn't even get out of bed once. He was just very miserable. We really don't know why - maybe he just was having an 'off' day. Hopefully he feels better tomorrow.

So I have a question for anybody who might understand the military vs VA systems...

Would it be better for us to retire Kevin? And please give me reasons why we should or shouldn't.

I had a long talk with the doctor last week and it's my general feeling that Kevin is emerging on his own and this hospital is doing nothing for us (therapy wise) than any other hospital or home health plan could do. We are getting 45 mins of speech and an hour of PT/OT combined 'mostly" every day. To be honest - every word Kevin has learned, every new event, has been taught by Breezy or I. I just can't see being here.

So I chatted with the doc and he agreed that Kevin doesn't require all of the newfangled therapies or equipment that is needed by those less emerging than Kev.

To me, that meant that we could go home soon, right? Wrong.

We actually can leave the hospital once Kev has his skull replaced, but I was informed that it won't be in Kevin's best interest to go back to Pennsylvania and endure the cold winters.

That means that we have to make our home somewhere warmer. My first thought was to go back to San Antonio as I really liked it there. But there are two reasons that I had to nix that idea - one - plane tickets would be too expensive for my family to come and visit and two - we need to be close to a polytrauma hospital. After further researching this over the weekend, it appears we are going to have to stay here in the Tampa area. This makes me sad. I don't really want to live here. I just want to go home.

But, after having yet another good cry about this issue - I do realize that it just doesn't matter what I want. It's all about Kevin and he needs warmth. And now I need to figure out how to buy a home for us.

Bringing us back to my question - Should we retire Kevin from the Army?

The VA will give $60,000 to help buy or adapt a home for 100% disabled veterans. I will need that money to have a down payment. But do I want to retire him to get it?

I am just so scared to make the wrong decision. First, I don't want to retire him in case he doesn't want that. (but to be honest - he tells me he doesn't want to stay in the Army anymore - however - I don't think he understands what that really means) Second - am I going to screw him out of medical care he will only receive as an active duty member? Third - am I going to screw him out of benefits he will only receive as an active duty member? And what am I not thinking of? I am completely uneducated about the military. And about the VA.

So please - anybody - throw your thoughts, good or bad, out there for me to think about. I was told I needed to make a housing decision in about two weeks if we are going to go home within the next four months or so. I guess this is the time frame it takes to buy/build a home for someone that is handicapped and I am anticipating the cranioplasty to be in Jan or Feb. We would need some recovery time and then I want to stay long enough to make sure he doesn't reject the plate in his head.

I have been really worried about making this decision. I am just so scared to do the wrong thing for Kevin.

So help me, please! Just click on the word "comments" at the end of this post (if you have never done so) and give me your 2 cents...

Day 169 - Nov 16, 2008

Ok...so where do I begin...

First, we did get a van for the weekend, but we didn't really use it much. I think I already mentioned that we went for a ride on Friday night and yesterday we did venture out to The Cheesecake Factory. Here is a pic of Kevin sitting in the van. His chair wheels right in to the front passenger side:



First, I will say that he handled the ride very well. I think he just needs to be in a better vehicle and closer to the front. But, I will be the first to admit that the outing wasn't all that great. Although it's a delicate situation, Kevin is just learning how to use a urinal after months of being cathed. Unfortunately, during all of our outings, he thinks he has the urge to go to the bathroom the whole time. I assume it's stress related. So, we did spend the whole time at the Cheesecake Factory in the men's room. Yes - the men's room. I found that most of the guys could care less that we were in there. Only one slammed out and by then - I coulda cared less.

See? I told ya I'd get used to it.

Anyway, here is a pic of Kevin in front of the glass case full of cheesecakes. He was still in a miserable mood, but at least he was able to look at the camera. I promised him another trip back once we get this all under control.



And to show y'all how much he really does love it - here is a pic of him at home eating the Chocolate Chip Cookie Dough Cheesecake. I just can't begin to tell you guys how much he loves this stuff!



Today, we actually had a lazy day. We didn't even go anywhere. We had planned to go to the movies, but we decided to stay at home and play. I FINALLY found a Wii and we all bowled all day. And it took us a while, but we even got Kevin to play, lol. I knew once we showed him what a good time we were having, he would want to join in. I am so glad that he at least has the use of his left side and can do these kinds of things. I am also proud to say that it didn't take him too long to catch on. Here is a pic of he and Breezy playing:



Other than that, it was a quiet weekend. Kim, Breezy and I did head to the Hard Rock last night. We had fun playing the penny slots for an hour or so. There just isn't much time to do things after Kev goes to sleep. I think we are all so tired by then that sleep sounds more inviting than anything.

And now I am going to head home. My sister leaves tomorrow and I am hoping we can just BS for a while. Mainly, she has just jumped in and helped with Kevin (giving us a much needed sleep-in 3 days in a row - WOW!), but it hasn't left any time for visiting.

Day 168 - Nov 15, 2008

I am going to pass on writing tonight. My sister, Breezy and I all went out for the evening and it's late.

I will catch you all up on our weekend tomorrow night.

Day 167 - Nov 14, 2008

Kevin started out having a crappy day as he had to have some sort of gastric test to find out why he is vomiting. The poor kid had to eat radioactive scrambled eggs for it too. He did well, although he did vomit, but it lasted two hours and he was exhausted by the time it was done.

We were supposed to go to the movies today with rec therapy too, but he just wasn't up to it.

But...we did get a van for the weekend so when I picked it up late this afternoon, we got Kevin loaded up and went for a long car ride (about an hour). We kinda just did a loop and didn't stray too far from the hospital just in case we had trouble. Kevin REALLY wanted to go to the Cheesecake Factory today, but I talked him into waiting until tomorrow afternoon as it is a Friday night and it would've been packed. I also wasn't sure if he could handle going that far as we only went 2 blocks the other day and he was in so much pain.

So...if all goes well...tomorrow we are heading to International Plaza for Kevin to drool all over the glass showcase just full of awesomely delicious cheesecake, lol. I will take pics of the event too - it was already dark by the time we got him loaded up tonight.

Wish us luck tomorrow! I so want us to all have a good day!

Day 166 - Nov 13, 2008

We didn't have a very good day today. Kevin pretty much slept on and off all day. I'm not sure if it's a new medication that they put him on or if it's because he has a roommate and Vinnie was making noises Kev is unaccustomed to all night. The doc was going to take the new med off the list, but I asked him to give it another day. I don't want to remove a med that could have a good effect down the road if it's not necessary, kwim?

The doc is also wanting to start Kev on a medicine that will help with his ability to speak. I was really excited about it, but it turns out that there are some pretty major side effects. I am in the process of researching it and will make a decision shortly. His speech therapist told me that a lot of the patients here take it and have no problems. But still...it's not a decision I can make lightly.

Now I need to sign off early tonight. My sister is coming to visit and I have to run to the airport. The sitters for Kevin have been reinstated so I can feel safe leaving him again.

Day 165 - Nov 12, 2008

We had a pretty decent day today. We did get a roommate and that's a little challenging, but at least he isn't flashing me, lol. He seems like a pretty good kid so we can handle it.

I had a long chat with Kev's primary doc today too about the sitter issues (among other things). I told him that I am not feeling safe here anymore due to all of the nursing issues and I don't think Kevin can be left alone. To be honest, I don't feel anybody that can't get a nurse's attention in times of distress should be left alone. So, I believe he was planning to add a sitter back onto the schedule, but it didn't happen yet. I'll be patient - until tomorrow.

I also straight up asked why they didn't just drain the rest of the fluid out of that sac above Kevin's left ear. To my way of thinking - the fluid is causing the vertigo and pressure pain. We should just drain it, right? But, he informed me that some of that sac is actually part of Kevin's brain. Now I knew it wasn't in it's proper place, but I didn't realize that it was out that far. And from what he said, it probably won't go back into place until the cranioplasty. Man, that scares me...

As to Kevin's pay issues - the liaison came to me today and told me it will probably take a while longer to get it figured out. I told him he still had 3 days but that was all he was getting. He said that someone up the line hasn't gotten to it yet and I told him that as long as he has his own butt covered all will be well...for him anyway. TR - I didn't drop your name exactly - but I did tell him that I 'knew' someone at the Pentagon that was just waiting to hear from me. It's not really funny (yet it is), but he started dripping and backpedaling and told me he would speak to me tomorrow. Man...he was scared. I suppose I shouldn't take such glee in this, but the look on his face was really funny. Showing my snarky side, eh?

Other than that, nothing much happened today. We did have a bone scan, but I don't have any results yet. It was just a follow up to the H.O. to see if it's still an issue or if there is more bone growing. I will let you know as soon as I hear anything.

So it's midnight and I am going home. The sitter will be here in a few minutes and I can feel safe leaving. Have a good night everyone!

Day 164 - Nov 11, 2008

Happy Veteran's Day to all the veterans and military personnel out there!

So we had another good day. We just had one or two little vomiting incidents and the rest of the day was pretty nice.

We started out with a nice parade here in front of the Fisher House/Hospital. We were able to get Kevin up and ready in time and we even managed to find a nice shady spot to stand in. Here is a photo:



We then went to a BBQ that they had here at the hospital, but it was too sunny and I just can't manage to hold the umbrella and push the wheelchair at the same time yet. They actually accommodated the patients though and had a space set up in the auditorium where you could eat and watch some young dancers perform, so we went there instead.

Which reminds me - keep your fingers crossed for a nice overcast day this weekend because an organization is bringing a van for us to use and we want to go to Busch Gardens. It's the closest thing to do and I knew if we needed to we could get back to the hospital quickly. (and yay! there's a family bathroom there!!)

And then this evening we had a special guest here and he made a special trip down to the Fisher House to meet Kevin. Kevin was taking a nap and didn't want to go up to the hospital to meet this person, so the sports legend Mike Ditka came directly and personally to see Kev. Apparently he is a Pittsburgh area native. Here are a few pics of this event:







And just so y'all know how unsportslike I am - I never heard of the guy, lol.

Oh - and I forgot to tell you guys that Kevin learned to say "Bye" yesterday. Breezy taught him how and he is quite proud of himself. It makes it easier too because he would always say "hi" when he was really saying "bye" and anyone leaving the room would come back in and it could take forever for them to understand he couldn't say 'bye' yet, lol.

So I am going to hit just a few questions and then I want to watch a movie tonight. Breezy is staying up at the hospital until at least midnight tonight, giving me the 'night' off.

Brenda - Kevin is 173rd Airborne.

Jessica - that cafepress site is great too. I will spend some time looking through it but I would think anything would work! And I really like the button you sent the link for.

To everyone that sent suggestions on comments due to the stares - love them all! I will just bet all of them will pop out of my mouth at different times and probably that 'Italian Salute' will be fired off as well, lol.

Petra - as of today, Kevin's pay has not been taken care of. They have 4 days to fix it or my mouth starts opening. I gave them one month and the 15th will be it. I have kept all of the phone numbers from the people that posted here with their info and I will contact everyone. This is just not fair and I shouldn't have to fight this fight.

As to complaining to the caseworkers about the quality of care, I have a meeting tentatively set up with the director of the unit. I have already went through every available avenue and now I am at the top guy for this ward. I hear he gets things done, so we will see...

Leslie - if you want to make Kevin a hat - that would be great. Take your time though. He can't wear one until his cranioplasty is done.

Ok - off to watch the movie. I keep falling asleep a few minutes into it so I am hoping I can make it through, lol.

Day 163 - Nov 10, 2008

We had another great day. Kevin was actually in the chair about 11 hours today and we went to the house for a good 6 hours. We played cards again outside and then we had a nice dinner and followed it again by some tv.

I love when I come to the hospital and we have a nurse that really cares and we get him showered, lubed up, compressed and dressed by 10:30. This enables us to have a more normal day. Unfortunately, we have been having a LOT of nursing problems and to be honest, I am getting a little frustrated.

To hit a few of the points - Kev is not supposed to ever be alone, yet for the past two weeks he has been alone when I have arrived nearly every day. Some of those times he has even been given food or drink and he is absolutely not allowed to eat/drink without supervision. One time his bed was the absolute highest it could go and one of our issues is his trying to get out of bed and falling. Then we have had other people's eye meds in his room and I have to wonder how often he has been given the wrong ones. We have also had meds not even dispensed. There are just so many frustrating things going on here. And I do understand that it's probably the norm everywhere, but I have to ask - how can anyone feel comfortable leaving their loved one in this type of situation?

It's actually made my days even longer. I used to leave when he fell asleep and sometimes that was like 9:00. Those were the 12 hour days. Now I have to wait until close to midnight even if he falls asleep early because they did remove the sitter from 4-12 and I was actually ok with this when they did it. But since then, it was proven to me that Kevin knows HOW to ring the call bell - but he doesn't understand WHEN to.

Case in point - while in the middle of writing this post, Kevin threw up. I was in the hallway talking to his nurse because he was trying to go to sleep. I was out there maybe 3 minutes. So Kevin was getting ready to vomit and didn't understand to call the nurse. Luckily - I heard him moaning and rushed in. If I hadn't - where would we be? He could have choked to death on his own vomit as he is usually laying down when it happens and can't hold his head in the right position.

Grrr...I really hate to bitch about these things, but I am just so frustrated and tired of having to deal with it all.

Now see how my moods are just swinging? I started out with this nice happy post about having a great day and ended up with Kevin being severely sick and venting about nursing issues.

Calgon, take me away...

BUT - I am going to revert back to something good (can't end on a bad note, now can I?). The Steelers were kind enough to send Kevin a huge box of goodies! He received a football signed by each and every one one of the team players. He got an autographed framed photo of Troy Polamalu. A personal framed message from the owner of the team. A really nice shirt. A team photo that is framed as well and a whole bunch of other things. Here is a photo of Kev with some of it:



Pretty cool, huh? Kevin was really excited and Breezy was really jealous, lol. I wish I would have caught a pic of the guy on the left side in blue. He is actually the one responsible for all of these items arriving. He called the Steelers home office weeks ago and talked to them. He works in Prosthetics and is in charge of Kevin's helmet. Once it's made - he is planning to have it painted with the Steelers logo on it. Great guy. And the nurse in the pic is a wonderful woman too. Never had a problem with her. I keep telling her she is coming home with us when we go...

Day 162 - Nov 9, 2008

We had a great day today. Finally! We got up and moving, but we were lazy and didn't go down to my house until about 4:30 or so. We stayed outside and played WAR (the card game) for quite some time. After that, we ordered dinner in and Kevin's appetite came back with full vengeance. He ate two orders of Shrimp Scampi, some steak, some chicken and bread and all the other sides we got. It was so nice to see.

After that, we just watched some tv and Skyped with my sister, Kim.

Because it was just a lazy day, I don't have much to say so I am going to just answer some questions from the comments:

First, Em - that's a great website. The only problem is that Kevin was part of OEF (Operation Enduring Freedom) in Afghanistan. He wasn't in Iraq. And for some reason, they don't have any OEF merchandise yet. I plan to email them and ask if they will eventually have OEF items in stock though. The merchandise is really great. Thanks for the link!

Brenda (and everyone else) - I do have to figure out how not to be mad when people are staring. I like the sign idea, but don't think Kevin will go for it. I just have to think of a nice 'passive agressive' remark, lol. Hopefully it will just come to me next time we are out (which is Friday - we are going to the movies if all goes well). I am typically not a nasty person so I am sure with time none of this will matter to me. I just hate the possibility of Kev feeling hurt that people are staring at him. After a while though - I'm sure neither one of us will care anymore.

Marianne Q - we would love some baked goods. Jodi sent us so many homemade cookies and brownies that we all gained major weight, lol. Not to mention all the Halloween candy everyone sent, hehe. Seriously though - I don't have the time to bake anymore so Kev will love it. And thanks for sharing "your Kevin's" sensitivities to the red dye. It felt good to know that I am not just grasping at straws insanely.

Brenda (again, lol) - you mentioned the gastroenterologist prescribing an antibiotic for your mom. Kev's gastroenterologist has done the same. His stomach doesn't always empty very quickly either (how could it though with all the food he eats, lol) and I thought they were nuts prescribing that, but they say it helps move along the digestive system. Go figure, eh?

That sums up everything for today. Gotta get to bed...

Day 161 - Nov 8, 2008

We had a much better day today. Almost like it had been for weeks before all of the pain came.

So, I have a lot to tell you. Let's see...

First, the pain did begin to go away when I eliminated the red dye. The weather really hasn't changed much and it could be the room temp, but I realized that we go to my house daily and it's colder down there. I still can't say that is was the red dye for sure, but we shall see. Now I am not saying that Kev has no pain either - because he does. But, he only has it when he is being moved to the chair or hitting bumps in either the chair or the car. We have been medicating him before moving him and that seems to be sorta working. All this past week, he would even be laying in bed just screaming in pain - that is not the norm for him at all.

We have also started the pain regimen. Somehow, all of his pain meds got canceled the other day, so we had to start all over again today. What a mess that was.

I have also decided to have our cranioplasty here rather than go back to Texas for it. I will admit that I wasn't overly impressed with my neurosurgeon there (for so many reasons) and I really like the team here. We have begun the process by having our CT scan solely for the purpose of. I was told that it takes over two months for the plate to be molded and I figured I better get the decision made. Kev's primary doctor also told me that often times people do so much better with their recovery after their cranioplasty. And I know myself that on some occasions people have awakened after the surgery with the ability to talk. Understand that that isn't the norm, but it can happen. I would so love that - but I am not looking for it. This way, if it happens I will be elated and if it doesn't, I won't be crushed.

And Alison, thanks for reminding me about the other CT scan. The docs were excited to see that his brain has moved substantially back toward where it needs to be. We still have some movement to go, but it has moved quite a bit. I will be adding some pics to this post and you guys will see how dramatically his head size has went down. It's truly unbelievable.

We also had a consult with the doctor that will do the eye surgery on Kevin. He told me that he still has no scratches (I am so anal about the eye meds to keep them lubricated) so we can wait if I want to. I think I am going to wait until the beginning of January for it. So far, we are only going to do the left eye and the plastic surgeons are thinking about waiting to take care of the burns on his neck. This is one of the reasons I want to wait until Jan for the eye surgery because I really want to do them both at the same time. I hate the risks involved from anesthesia. My heart always hurts so bad during and after surgery just because of the possible complications.

Moving on, we did end up going on a trip to mall. We had about 20 minutes of a good time. I actually left there thinking that I just can't do this. It was so hard dealing with someone in a wheelchair. I am sure it will get easier each time we go out, but some things hit home with me. For instance, and this is a biggie - how on earth do you take a male to the bathroom when you are a female? I tried to take Kevin into the 'womens' room and he had a fit! He put his left leg up on the doorframe and stopped me from wheeling him in there. He was nearly screaming and I didn't know what to do. It's not like I can just go into a 'mens' room and make everyone leave. I'm sure the place of business I am in will frown at that. So how do you do it?

And then there's all the looks from people. I have thought about this so many times, but Texas never even blinked when they saw their soldiers that were wounded. Here? Heck, I was so pissed off that I truly almost said something to the two clerks at Subway, not to mention the hundreds of other people that stared rudely. I guess I need to figure out how best to deal with this because it is going to be an issue everywhere we go. and I surely can't start smacking people upside the head now, can I?

Anyway, as I said, we did have 20 good minutes. Here is a pic of the kids in the candy store, lol:



By the time this was taken, Kevin was already leaning toward the right. He does this sometimes when he hurts.

And here is a pic of Kev riding the bed bike:



That was exciting because Kev rode for a full 30 minutes and I am pleased to say that he even rode with just his right leg. He literally was able to pedal with that leg. He was so excited, and so was I! Notice his muscles in his left arm, lol. He was showing off how powerful he was since he could move that leg. Always a jokester, that Kev!

And to finish off this book for tonight, Kevin had a couple of boxes of his stuff arrive from Germany. We have nearly everything now, we are just missing all of his movies and his Xbox games. I was so happy to see his Blackberry in there cause that thing was expensive. And let me tell you - Kev was really happy to see some of the items too. Here was his favorite, lol:



Sgt G - if you had anything to do with sending this stuff - Thanks! It was really nice seeing his uniform with all of his pins and things. I thought I took pics of him holding his uniform, but I must have deleted them by mistake. I will retake them soon.

And now I am going to hit the hay. I know I have some questions that need answered and I will try to get to them tomorrow night.

Day 160 - Nov 7, 2008

It has been an incredibly long week and I am too beat to write tonight. I will sit down tomorrow afternoon and catch everyone up. There is quite a bit to say, but I am just exhausted.

Day 159 - Nov 6, 2008

Kevin did seem to be much better today. We actually had a great morning and we only had pain when we went to the mall today and that was because the ride over was too bumpy. Once we got back, he got back into bed and was fine again.

Not sure if it was eliminating the red dye, keeping the heat regulated or the weather being slightly better, but I'll take whatever it is. And here's hoping to another good day tomorrow.

So, I am going to cut it short again tonight as I want to crash. I will write more tomorrow night and I will have some pics of him riding the bed bike and us being out at the mall.

Day 158 - Nov 5, 2008

Things really weren't all that much better today. Kev has been in pain and he has been vomiting on and off all day. We started our pain management regimen today too, but we already had to up the doses and tonight we had to give him a shot of a totally new painkiller and finally...Finally! He is feeling well.

It's currently 11:11pm and he just ate half a pizza. It's the first time he felt well enough to eat today and when Kev can't eat? There's a real problem.

So I think the pain management doc and I are going to need to revisit the situation tomorrow. I did talk to our primary doc about this as well today, and he is thinking that we need to go a step further, at least for a little while.

And obviously we did not go to the mall today. We are going to try again tomorrow. Hopefully he feels better.

So getting to some of the ideas y'all have thrown at me...first, Brenda - I would never be offended from you comparing Kev's situation to your dog's situation. And actually, the weather change makes a lot of sense. I will say that it has been on the cold side here lately and someone keeps turning his heat down in his room making the temp fluctuate (nobody knows how it's happening though...must be a ghost - and yes - you are hearing sarcasm drip right there). But anyway, I don't have time to go back and check this out, but I will pay attention to that from here on out.

And this could so be grasping at straws, but I remember there being a link to certain dyes and hyperactivity in both children and adults. Oddly enough, Kevin has been drinking red Gatorade the last three days. I don't know if this could have some bearing on it, but I won't be buying red for a while, just in case.

Sarah, you mentioned Kev taking Neurontin. We are actually in the process of weening him off of that. We just started it recently and we believe that is what was causing him to sleep constantly. It seemed every time he took those pills, he was out like a light within 20-30 minutes. We are down to only taking it at night and happily - he didn't take as many naps today. And tell everyone at work I said "hi"!

So many things going on all at once, huh?

Holee, I agree that pain management is a good thing, and I am all for it when necessary. In the past, I would never have worried about Kev taking pills unnecessarily, but he's not mentally the person he used to be. I was watching him ask for sleeping pills before even trying to go to sleep. I also was seeing him ask for pain meds while playing around without any signs of pain. I think if a person can mentally make a decision on their own, that's one thing. But when a nurse or doctor looks at me and asks if he is in pain - I have to say whether to drug him or not. And there have been times he has asked for strong meds and I have went to the nurse on the sly and made them give him Tylenol instead. I just don't want to be the cause of his addiction and I also don't want him to be the cause because he just doesn't realize the consequences of asking too frequently or when it's not really needed. Kwim?

And I do realize that it's possible that Kev will probably be on some form of controlled substance for the rest of his life. I just need to know it's necessary and up until now - it hasn't been. And what if this is just a temporary thing and we end up medicating him without him needing it?

So, so confusing. And so, so scary knowing I could be making a wrong decision.

Moving on though, Jane - you mentioned the Fisher House and that is actually where I stay. If we didn't have that - I would be sleeping on the bench in front of the hospital with two other homeless people that are always there.

Ok, I need to get to bed. A nurse came in and was discussing Kevin with me and it's now almost 3am and I have to get up soon to go back up to the hospital. So, I am cutting this one off in the middle.

Remind me to tell y'all what the CT scan showed...

Day 157 - Nov 4, 2008

Things are pretty much the same as they were yesterday. Kevin has been in a bit of pain today, with vomiting and many naps.

A few of you have asked why the pain hasn't been managed all along and it's really just because it hasn't been necessary. We go for long periods of time with very little or even no pain whatsoever. I had trouble in the beginning with the nurses thinking Kevin had to be in pain due to his burns and multiple other injuries and they were medicating him constantly. I had to nip it in the bud because it was causing him to sleep all day when it really wasn't necessary.

Today though, because it's been going on more and more, we did have a pain management doctor come in and we discussed treating it long term. We set up a plan and we shall see how it goes. I am just loathe to do this for a couple of reasons. Number one, Kevin builds up an immunity to the meds kinda quickly. I hate to over-use something that could be necessary later and when it's really needed - it will no longer do its job. Number two, as I mentioned before, we really don't want to take home any addictions. If I honestly thought Kev was in pain daily - I wouldn't blink an eye about keeping him doped up. But we really don't have pain all that often and I worry this might end up being more of a problem than a solution.

Gosh, I just don't know what's the right thing to do here. A constant drug regimen or use it as needed. I wish the answer would just drop from the sky...

As to Megan asking about the CSF sac draining being a good thing? Yes, it actually is a good thing, but I think it's happening too fast. It stands to reason that extreme changes in size over the course of 8 hours or so would be hell for any reason. I have noticed a pattern of pain when there are speedy changes as opposed to having it happen gradually over weeks at a time. From what I am gathering, the docs are thinking that the sudden release of that tension is causing nerve endings that were accustomed to that pressure to throb in their new 'free' environment. Make sense? And for the record, I'm not sure any of this is correct. These comments are based on a newly educated guess after watching this happen for months now. And I am also learning that the docs just don't really know all that much about the brain. I guess it's just one of those organs that there is no way of knowing much because it differs in every one of us.

So hopefully we will feel better tomorrow. We have an outing planned to go to the mall and do some shopping, but if Kev is feeling like this - I don't plan to take him. Keep your fingers crossed...not so much to take him shopping, but that the pain subsides. I'm not sure either one of us can do this another day...

Day 156 - Nov 3, 2008

Today was a horrible day. Kevin was in extreme pain most of the day. Breezy actually went in at 9am and I was going to sleep in and go up at about noon or so, and she called me at about 9:30 and was scared. I ran up there and he was just wiped out. All the docs were there and the nurses too. He actually was like that most of the day - screaming in extreme pain one minute and literally sleeping the next minute.

I personally, once again, think it's too much fluid coming off his head at one time. When I got up there this morning, more than half of that sac of fluid was gone. It was there last night when I left and I asked if Kevin slept on his right side last night and I found out he did - causing the CSF to build pressure and drain faster. That whole sac is nearly gone.

Anyway, we did go for a CT scan, but I haven't heard the results yet. Other than that, neurosurgery didn't come up and take a look so we will see what tomorrow brings.

Needless to say though, we didn't do anything today so other than the pain issue - there is nothing to report. We didn't even come down to the house or anything. Hopefully Kevin will feel better tomorrow and we can get back to fun and games. I just hate to see him hurting like that. I would do anything to take that away!

Day 155 - Nov 2, 2008

Not a whole lot happened today. To be honest, we all mostly slept and lounged the day away. Kev must have taken about five naps today and I know Breezy and I both took at least one each as well.

So...I am going to skip writing tonight. Kev is already asleep and Breezy and I are going to take a drive. We do this often times at night to familiarize ourselves with the area.

Day 154 - Nov 1, 2008

Well...it finally happened! Kevin said MOM today - yay!!!! Maritza was telling him he couldn't have any dinner until he said it and he just said it on the first try like he has been saying it all along. I think there were about 12 people in the kitchen and everyone just started clapping and dancing. Kev was so proud of himself!

He has just been making remarkable strides lately.

Today, he was also making his right leg move by using the leg muscles and partially using his left hip. This is the first step toward usage. It's his brain understanding that it can make it happen, it can make it work - even if it has to use any part to do it. It finally seems to realize that the leg is there. I wish y'all could have seen the look on his face too - he was just as surprised as everyone else.

And I am quite proud to announce that East Brady built a skate park and named it after Kevin. Here are a few pics:









Thank you very much to Jeff B. for taking these wonderful photos. I have been told that the kids are all loving it already and we can only hope that someday...someday...Kevin can skate again.

I will tell you that Kevin apparently was able to read the sign and got all excited. And he must have remembered the houses behind the park as he kept pointing to them. Photos seem to always jog his memory.

Well, I am going to cut this short today. I have to run Breezy home as she called me at 3am petrified and told me there were gunshots behind the hotel. Obviously, I went to get her and bring her here for the night. We were told they might have been fireworks, but who can say for sure. I know there were cops everywhere by the time I got over there. So anyway, I have to take her back to the hotel and pretend we are living in a safe community. Boy, have we been spoiled all these years...

Day 153 - Oct 31, 2008

Lots of little/big things today. First, Kevin began swallowing pills today. We didn't put one thing through his feeding tube at all today. He swallowed everything. This is big, because he is now off all feeds as well, due to the fact that he eats like a horse, so in a week or so, they will probably remove his tube.

Second, Kev was able to 'walk' his wheelchair all the way to the elevators. This is a considerable distance for someone in his situation and it is just showing us exactly how strong he is.

Kevin was also able to pull himself up 5 times into a standing position while on the standing frame this afternoon. That is the piece of equipment that I have pics of him standing with the other day. They actually pulled him up halfway and made him do the rest himself. From what I hear - he was even dancing while standing. I was in a meeting today, so I missed PT. I was so bummed! I should have given his therapist my camera...

Kevin also had an EGD (don't even ask what the letters stand for cause I couldn't even tell you. I know they took the tube down his throat as far as they could) and they don't see a 'true' reason for the vomiting. It is showing that his stomach is tilted slightly and I can only assume it's due to the scar tissue in his belly, but that's not causing the vomiting. I believe they are going to run a dye test next, but the doctor feels that the issue will resolve itself once the feeding tube is removed. I sure hope that's soon. That will be yet another huge step toward total recovery.

We have also eliminated the sitter from 4-12. I was so scared to leave tonight after Kevin went to sleep, but I forced myself to. I know it's a waste as we are at my place until usually 9-10pm and the sitter just sits and watches tv while we are gone, but it's just so scary to leave him alone - even while he is sleeping. I mean, what if he wakes up and is scared? We did teach him how to use the call button, but to be honest - I am not sure he understands when to push it. It's always easy for him to do something, it's just not always easy for him to understand why I am putting my trust with the nurses and I guess time will tell. He is just progressing so much.

We sure are lucky, huh? Who woulda thought I would ever say that? Today marks the 5 month mark and I really do feel lucky. I was afraid to even wish for his personality and it's there completely and that makes all of this ok. I can deal with everything else - homelessness, paralysis, everything - as long as we can still see that goofy smile and that mischievous twinkle in his eye.

Now y'all just need to remind me of this when I am having a 'down' day, ok? LOL!

Day 152 - Oct 30, 2008

First of all, Tracy left today. I really don't understand why her family needs her so much when really...we could use her so much more, lol.

But left, she did. We still managed to have a great day though. We were kinda lazy until this afternoon when he had all his therapies. Today we worked on transferring him from the chair to a mat. The therapists think he will be able to do this on his own once we get the vertigo taken care of, enabling him to stay at my place. That (the vertigo) in itself seems to be getting marginally better, but I am thinking that's gonna take a while for it to fully go away.

And today Kevin figured out that he can actually push and 'walk' his chair around all by himself. He wanted some candy and I told him if he could get to it, he could have it. I was not helping. He was all the way across the room (about 12 feet) so he pushed the foot rest up and shuffled with his left leg, while using his left arm to help steer that chair right to the closet (by pushing off of other objects in the room). He also tried to pull himself out of the chair to get into the candy bowl and that's when I had to step in and stop him, otherwise he would have fallen. Man, was he proud of himself! And to be honest - I was quite proud of him myself.

Then tonight, they had a small Halloween party outside were we toasted marshmallows and had S'mores with hot chocolate. Kevin and Breezy got to wear goofy masks that we picked up at the dollar store and it was fun. I really love it that they do fun things for the patients like that here. Here is a pic:



And that about sums up our day. Tomorrow Kevin is having a scope taken down to his stomach to try to figure out why he keeps vomiting. The docs finally came in this afternoon to look at the issue. Keep us in your thoughts tomorrow. I really hope they can figure it out.

Day 151 - Oct 29, 2008

We had an awesome day today. For the very first time in 5 months, Kevin got in a car and went for a ride. We actually went to a video store and rented movies and while on our way, he saw a Subway and nearly jumped out of his wheelchair trying to get us to stop. Obviously, that's where we went for lunch and unbelievably, he ate the whole 12" sub!

So here are a few pics of our outing:









I have to admit that I was worried that he wouldn't get in the car. It seems like sometimes he doesn't like to do things the first time around and he starts shaking really bad when we get near a parking lot (I am thinking that is PTSD). But he acted like this was something he did every single day. He just kept making the therapists turn the radio station and he was acting like a rapper and singing "yo, yo, yo" - it was hilarious! That kid will do anything to keep us laughing!

And I was told that there might be an organization that will loan a wheelchair accessible van to us and once we have that - we are cruisin'! There are so many things we can do here in Tampa and we will do them all.

Knowing that we need to really build up to all day adventures, we were in the chair 10 hours today. Actually, we went out and about in the van for about an hour and a half and then went to my room and spent the rest of the day and evening (til 10pm). We watched two of the videos we rented and visited with Chrissy and Drew too. We did have to make a quick run to the hospital for his meds at about 5pm, but we didn't even get out of the chair for it. It was like a drive-thru pharmacy, lol.

And that about sums up our day. Pretty cool, huh?