Today my beautiful daughter and my parents passed each other in the skies - probably over one of the Carolinas, lol. Breezy went home for a couple of weeks and my mom and my dad came to visit for a whole week! I actually cried while driving to the airport the second time today to pick my parents up. Although my mom has been to see us 2 or 3 times, I haven't seen my dad in over 7 months. It's just so hard because I really miss my family and my friends.
Kevin was really excited to see them too. I wish his head had been tapped before we got back, but he did at least show some emotion when they walked in. And once he was tapped - he was really happy to have them around.
We had a really rough time getting fluid off today though. It was way over an hour and we finally stopped at a little over 200 CCs because we just couldn't get anymore out. Yet his head was super large today, which makes no sense to me. I suggested to the doc that we tap him twice a day and see if it's any easier and he agreed to try it tomorrow (usually the first 100 CCs happen in 10 minutes or so). Maybe this way he will be well enough to do his therapies and keep going through the night. As it is now, he is only 'good' for a few hours and then he's back to barely moving and there is just nothing there emotionally either. It's honestly like night and day.
And now I am going to end by adding a poem to my post. This was written by T. Beechey and it was posted as a comment to last night's entry. I cried when I read this and to be honest, I am still crying. Thank you, T!
JUST A SOLDIER – A Tribute to Kevin Kammerdiener (T. Beechey)
He wasn't rich or privileged, he was just like you and me He came from a good home and close-knit community Everyone that knew him was glad to call him “friend” Whenever there was trouble, on him you could depend When he first heard the calling to join among the ranks Of the brave men and women in the Humvees and the tanks He didn't hesitate a bit, his duty was at hand To fight the fight for freedom for the glory of his land
He was being just a soldier, doing what he had to do And he did what he did for the Red, White, and Blue Proud to serve his country and proud to do his part He gave all he had that was in his heart
Dressed in the gear of combat, those beside him dressed the same He wasn't seeking fortune, he didn't quest for fame All that he desired was to serve his Nation well And to come home safely with a tale or two to tell The tasks he was given, he never questioned why It wasn't his to query, so he dutifully complied Because he was a soldier and he had the job to fill The shoes of those before him who walked a distant hill
He was being just a soldier, doing what he had to do And he did what he did for the Red, White, and Blue Proud to serve his country and proud to do his part He gave all he had that was in his heart
On a day that we'll remember in the month of May This soldier bore the burden of a hefty price to pay He's no longer in the battle, but he still fights the war Every day is a challenge just like the one before And he meets every challenge with the same bravery That he showed as he stared in the eyes of the enemy He still is a soldier in each and every way And he's the reason I'm proud to live in the USA
He will always be a soldier, doing what he has to do No matter what's in front of him, he'll always make it through Proud to serve his country and proud to do his part The Nation holds you, Kevin, in its collective heart
Nothing much happened again today. About the only thing new is that we can't use the lift anymore to get Kevin out of bed as it broke days ago so now he has no choice but to stand up while holding onto me and pivoting from his bed to his chair. It's ok for the most part, but some days he is just so exhausted when we get home from my house and I need to pay attention so that he isn't too tired to stand up and transfer himself.
I have also hired a reflexologist to work on Kevin. She came for the first time last week one day and in that one message, Kevin's leg is able to move higher and the arm that is always contracted so badly has been staying down to where his hand is on his belly instead of up at his neck. I have to admit that I was a little bit skeptic about it at first, but I figured it couldn't hurt. And it's a little bit pricey, but it's worth it if it works, right? So she will be back on Wed I think. I am anxious to see if it makes more of a difference.
We still haven't agreed on a price for the house either. I know what we can afford and I so hope it works out. I also hope we come to an agreement soon. I would like to get moving on this because it's so time consuming to find anything you like and the time to take Kevin home can arrive really quickly. It's truthfully been almost a month since we decided on that house and we are no closer to getting it than we were that day. At this rate - it may take a year to buy one! This is why I was in a sorta rush to find one - the amount of time it takes. Well, surely things will start rolling...
And I just want to point out that we arrived in Tampa four months ago today. I have to admit that time goes much faster here - probably because he is out of the critical stage and our days are full of new things. When we were at BAMC - it was pretty much always the same.
And although this whole ordeal sucks - we have to admit that the last four months have been pretty remarkable. Kevin has made HUGE strides and it makes my heart sing. Now if this cranioplasty can just fix this fluid issue...
I had my first really yucky experience trying to get Kevin into a Subway that claimed to be handicap accessible, but truly was not. I just couldn't do it. There was no way for me to hold the door open and lift his chair up the small 2 inch step at the same time. I was so relieved when a gentleman stopped his car and ran over to help me. Phew! What a struggle! And let me tell ya - I almost asked him to marry me, lol!
But seriously? That was just not fun. You just don't think about little things like half steps and doors that won't stay open while you enter. Just how do people do it that don't have help? How do people in a wheelchair open doors when they only have one arm that works and the door opens the opposite way? And how do you hold it open while wheeling past it if you only have one arm? I don't know - maybe I am just being dumb as I am still new to all of this. Maybe one night I'll be laying in bed and I'll hear that 'ding' that explains how it all works. Man, I sure hope so...
So when we left Subway (this has been a DAILY thing for over a month now. He even wanted it on Christmas Day!) I started heading home and I looked in the mirror and there was Kev already eating! He had unwrapped that sub and ate half of it while driving the three blocks to get home. I laughed so hard. And I just love it when he does things that he would have done in the past. It shows me my Kev is still in there and that maybe, just maybe, he will be all better once that cranioplasty takes place. We only have a few hours a day where he is somewhat like he was a month or so ago - before the swelling again.
And before I go I just have to say - Jody - I will give MTV a call and see if Pimp My Ride would be willing to overhaul that new van, lol. I can just see it now - neon green and pink with some spinners and when we stop at a light it can bounce up and down with screamo music blaring out the sunroof. We can have a fur steering wheel cover and a horn that plays 16 different tunes, right? Yep - sounds like a plan, hehe. Maybe Jennifer from Ride-away (the wonderful woman and company that helps people like us find vehicles) can hook up with them and do this for all the guys. What do you think, Jennifer? LOL!
Not too much happened today. We couldn't even get Kevin to leave the hospital so we stayed in his room all day. He just wasn't feeling up to par today.
So there really isn't anything to say. I do want to answer a couple of questions that have come our way recently though.
First, Jessica you asked if we got the cards from your sister and the answer is yes. We also got another batch of cards and 2 big boxes of stockings that we passed around the ward. Everything was a hit! Thanks to all!!
Oh and all the baked goods - yum! I seriously think Kevin's whole life revolves around food, lol.
Holee - you asked if people can still send donations to the bank and the answer to that one is also yes. I actually prefer that because Paypal charges a fee on each transaction. I will try to put the bank's address on the blog over the next few days. As I mentioned - everything is going toward Kevin's house.
Ann - we miss you here in Tampa. I am glad Mark is doing well at home too. Come back soon!!
Yay! Kevin and I went on our first solo trip today. We were just going to run around the corner to DQ (for me) and Subway (for him) but instead we ordered Fettuccine Alfredo from Macaroni Grill and we drove about 5 miles or so to pick it up. Doesn't sound all that far away, does it? But let me tell ya - there is a traffic light nearly every block and it takes about 20-30 minutes to get there in rush hour traffic. We did fine though.
We had a real funny moment too. I had pulled over to call ahead and order and they always ask what you are driving because they bring it out to you and I said a bright blue minivan. Kevin started giving me the evil laugh - kinda like a "haha - you're driving a minivan" laugh and I whipped around in my seat and said "what the heck are you laughing at? You own it!!" Y'all shoulda seen the look on his face! It was priceless, lol. He had this look of mock horror and then we both just burst out laughing.
We did have fun though. Although - I am not sure how much longer I am going to be able to listen to heavy metal screamo music while driving, lol. But he starts screaming right along with it and his left arm is just dancing all over the place so I guess I will just grin and bear it. And please - somebody please - help me if I start liking that stuff...
So all in all - it was a pretty good day today. I am sad that Anthony is going home tomorrow though. He and Kevin get along really well and Anthony even went in the early shift this morning allowing both Breezy and I a sleep in. We have also had a lot of fun with him here.
But Tuesday my parents are coming for a week. That will be really nice...
I hope everyone had a great Christmas day! We did. We didn't really do much - which is always a good thing. The neurosurgeon actually came very early this morning so he was tapped before Breezy even got there. In one way that was great as he was raring to go early in the day. In another way that was bad because by the time dinner was ready, he was already lethargic and wouldn't even eat. He just slept at the table while we dined :-(
But we did really have a good day. We just lay around and watched movies and stuff. Kevin did at least eat leftover turkey for lunch and he ate a whole lot of it. He pretty much wiped us out of leftovers - even eating my portion, lol.
After he went to bed, Breezy, Anthony and I went to see a movie. I couldn't believe how packed the movies were here. I guess I am just used to small towns, lol.
And I guess tomorrow is a holiday so we get a whole long weekend of no therapies - yay! I am hoping to get Kevin into the van tomorrow and we can take a little spin. I guess we'll see...
We celebrated Christmas today as Chrissy has to work tomorrow and couldn't be here. So I stuffed a turkey and we ate tons of food and unwrapped presents this evening and it was a really nice time. We had my sister and brother and mom and my other nephew on Skype so it was almost like they were here with us too.
It was even better because Kevin was actually in a good mood the whole time. They had just tapped his head and he is always good for a couple of hours afterward - until he starts filling up again.
So everyone was happy and it really did turn out to be a good day.
And on that note - I am going to bed. Merry Christmas, everyone!
I am pretty much going to skip writing tonight as I had to run to Wal-Mart and it was such a horrible experience.
Kevin was really the same today as he was yesterday - maybe a tiny bit better. We did tap close to 400 CCs of fluid today though and we also brought him down to the house for dinner, but he got very nauseous and we ended up taking him back up to the hospital right after we ate.
Hopefully he feels even better tomorrow.
Oh and before I forget - some of you have asked why the docs don't come earlier to tap him and it's because they are in surgery all day. I tried to get them to come earlier, but there's nothing they can do. I don't like it - but I do understand.
From what I'm seeing, it looks like Kevin will be in a bad mood or just very withdrawn all day until his head is tapped. It's pretty much been like this all along, but it has been worse the last couple of days. I couldn't get him to eat or drink anything at all today until the doc came in and drew the fluid at about 5pm. Once that was done, he immediately wanted a sub and started drinking his Gatorade. Man - it's so hard to see him almost comatose throughout the day and then fine for a few hours in the evening. I sure hope that head plate gets here soon.
Other than that, nothing much happened. Kevin never got out of bed today and he actually was sound asleep by 7:30 (which never happens) so this evening Breezy, Anthony and I went to a Christmas lights show and then we did a little shopping. I am nearly done, only having to run back to Wal-Mart tomorrow night once Kevin is sleeping.
So, I think I will end here and go to bed a little bit early tonight. I know - it's still after 1am, but that's early for me, lol.
We got a huge surprise today! My nephew, Anthony, walked into Kevin's room this afternoon! I couldn't believe it!! I wanted him to come down for Christmas, but no more help on plane tickets is being done due to the economy. But in he walked!! I guess he decided at 3:00 this morning that he was going to come anyway so he bought a ticket and flew down. He will be here until next weekend so that will be cool.
He didn't tell his sister Chrissy that he was coming either. So we loaded Kevin into the van and drove out to St Petersburg to The Pier and showed up at her work. Chrissy nearly flew into Anthony - almost toppling the whole display of china next to him. Man, that was close, lol. It was such a nice moment and even Kevin was grinning from ear to ear (one of the few times he smiled today).
And (of course) we stopped at The Cheesecake Factory on the way home and bought a whole cake. Kev was in a really rotten mood all day today and sad to say - that didn't even help. But - I'm sure it will tomorrow when we give him a piece, lol.
I also had a visitor today and that was my friend Traci and her family. They drove down from Georgia to go to Busch Gardens. It was so nice getting to meet her as we only know each other online from a business that I once started - scrapmuse.com She recently purchased the business and we used to talk often. Her husband, Mike, is being deployed during the first quarter of the year and it was really nice to have a man talk to Kevin. He so rarely gets that as the bulk of the nurses are female.
So back to Kev - I'm not sure why he was in such a bad mood, but it lasted all day. I am hoping he just woke up on the wrong side of the bed today. Hopefully tomorrow he feels better. Due to this though, nothing much happened. It was all I could do to get him to go with us to The Pier.
And back to the donation thing...Emily - you know how to work me, lol. It was that "he is a soldier and he is a hero...let us thank him for that!!" line that got me!! The only thing I ask is that everyone please understands that we are not asking for donations. If you want to help with the house - we would really appreciate it. Kevin wants it so bad and I also want to make him happy. But also know that we would never be offended if someone didn't want to or couldn't help. This whole thing isn't about the money - it's about Kev. That being said though, any donations can be sent via Paypal to firstname.lastname@example.org.
Well, I need to get to get the little tree I bought decorated for Christmas. Goodnight everyone!
Not too much happened today. We drained another 300 CCs of fluid late this afternoon and then we took a nap (it is so exhausting). It was kinda too late to do anything by the time we woke up, so we just came down to the house and ate dinner.
We are very time limited. We can't leave the hospital until his head is drained so if the neurosurgeon doesn't come until late, we can't go anywhere. That's what happened today. Hopefully he comes earlier tomorrow.
Moving on, some of you asked me to set up a Paypal account for donations toward the house and I am giving it some thought. It's one thing to accept from an organization and another from single people. This is probably one of the hardest things for me to accept - having to pretty much live on donations. But I do know we honestly could not be here if if weren't for everyone helping us out financially. So give me a couple days to work this all out in my head and we'll go from there.
Today was another decent day. We tapped nearly 300 CCs of fluid today and it seems the more, the better. We also took a little jaunt to the video store and to Subway.
I will try to take pics of the van tomorrow. It is equipped with a lift and both front seats can be removed if necessary. This way, if Kev gets to the point where he can drive, we can remove the driver's seat and he can wheel right up to it. I do agree with whomever about the space in a van - it will come in handy when we drive back and forth from FL to PA (but I still don't like it, lol).
We also got the model of Kevin's plate (skull) today. I didn't have my camera with me at the time because I had just left the hospital and had to run back up there to give my stamp of approval on it so I don't have a picture to show you, but it is really neat. They basically just use a firm gel/waxy type substance and create Kevin's head with it. They leave out the part where he has no skull and they build a separate piece to fill in where it should go, thus creating the plate shape. From there, once it's okayed, they create the 'real' thing. Hopefully, we will get it in a week and then it needs to be sterilized for 48 hours before being placed in Kevin's head.
I have been told that although it sounds like an intense surgery, it's really not. It will only take about 3-4 hours and that's it. I can't wait because I so want it to fix the problem. And I think Kevin will feel better about himself once his head is shaped right.
We got our van today. Yay (hehe). You should've seen the look on Kevin's face when I told him he was the proud owner of a new minivan, lol. Suffice it to say, I believe he feels about them exactly as I do.
BUT - it was really nice to get Kevin out of bed for the first time in a week and a half and load him up into the car and drive around for an hour or so. We even stopped for chinese takeout and Kevin wanted to get out of the car and go into the restaurant. I am pleased to say that he didn't even feel the need to go to the bathroom while we were in there (but there were only about 4 people in there which makes a huge difference). I am hoping to take him out at least 4 or 5 times a week for small trips like that. I really do think that the more we go out in public, the easier it will get (for both of us).
I was kinda surprised that we were allowed to take Kev out and do this tonight, but the docs assured me that it's no different than it has been for the last how many months. After thinking about it, I suppose they are right. His head has been large since the beginning so if he feels up to going - we are gonna do it!
Other than that, Kev did have a much better day today. He was pretty much awake the bulk of the day and he was in a better mood too. He did have his therapies and I was glad to see him tolerating the chair for hours again. I was worried that we lost all that we had gained recently. He hasn't went down to the gym and walked again yet, but I'm sure he will next week.
200 days! Sounds like a lifetime, feels even longer.
Breezy and I had to move my room at the Fisher House across the hallway tonight to another room after Kevin went to sleep. We had a room with a connecting door and a family that needed two rooms could have benefit more from it than me, so we made the move.
I am a little of kilter because although it's the same room, everything is flipped. Some of my OCD is showing because I feel strange with everything backward, lol.
Oh well, everything is moved - now we just have to organize it all.
So moving on to Kevin, he seemed to do a bit better today. He finally got a shower - the first in 9 days and I am thinking that may have helped. He ate somewhat decently today too so that always helps.
Today was the first day that he didn't scream while having his head tapped too. Whew! That was real nice.
The docs were also told that the model of his head is on its way. They have to approve the size and shape and then the 'real' head plate is made. I guess his surgery won't be until after the holidays now though. That upsets me because each day we are introducing more and more possible chances of infection when we tap him. If he gets one (an infection), he can't have the flap (plate) put into his head for another 6 months.
Kevin also went for a CT Angio today. His heart rate was elevated yesterday and they wanted to make sure all was well with it. I am thinking it might have been the new pain patch they put him on. They had just changed it and he became severely restless and agitated. Maybe with his head the way it is it's causing a different reaction than normal. Not sure. I am keeping an eye on it though. Luckily - everything came back fine with his heart. YAY!
Well, off to bed for me. Steve - I think it was you that called while we were tapping Kevin's head. I will try to call you tomorrow.
I also contacted Building Homes for Heroes. The people that I talked to were so nice. Keeping our fingers crossed that they can help us out.
Kevin had a good afternoon today once they drained 240 CCs of fluid from his head. Up until then he slept all day, but afterward he was pretty good. He hasn't been in his chair or out of bed in any way in ten days though, but hopefully tomorrow.
I am not really going to write much today as I am just beat. I do want to throw another "THANK YOU" out to everyone that has been sending us gifts and donations. We have gotten some beautiful Christmas cards and tree decorations - some even homemade and hand carved - and a real pine wreath and some blankets and the quilts that Holee and her gang made for us made it down to us this week too. Everything is so beautiful!
And I really chuckle when I find Subway gift cards and Cheesecake Factory cards and even some McDonalds cards. Kevin's face always lights up - which is so funny to watch.
And I want to add that all donations are now being put into the 'let's buy Kevin a home' fund. I am hoping that we will be able to find an organization or two to help us out with some of the cost of the home and I did apply to Homes For Our Troops in the hopes that they can handle all of the adaptations. I do realize that it's a buyer's market right now, but homes are still very pricey in this area. I just don't want Kevin to have a huge mortgage payment so I am hoping this all works out for us. And it's sad to say, but once he checks out of the hospital, my income is done. So I will not be able to have any type of a paying job because I won't be able to leave him, but need to somehow figure out how to pay my own bills. Fun! Fun! Fun!
Oh well, I guess I'll cross that bridge when I get to it...
Before I really get rolling on this post, I want to point out that I was in no way angry at anyone for voicing their opinions to me the other night. I also don't want anyone singled out as lecturing me or anything because I honestly do believe that everyone has our own best interest at heart, it's just that people THINK we should be cracking up and when we get mouthy they assume it's finally happening.
But anyway, Kevin pretty much slept all day today as his head is even larger. The neurosurgeons can't seem to get all the fluid to come out of the shunt so more and more is being left behind to swell his head. I mentioned a compression wrap of sorts to be worn around his head and the doctor shunned the idea the other day, but I guess they are going to apply one tomorrow after all. Maybe I missed my calling, huh? NOT!
I did meet with the realtor today and we put a bid in on the house that Kev fell in love with. It's very expensive (to this Western PA girl) and I can't go much higher than what we bid so hopefully the bank will consider it. We talk about this house every day while Kevin's head is being tapped so I really hope it works out. This is the only topic I can use to get Kevin to focus on something other than the pain for a minute or so every now and again.
You guys just can't imagine what it's like to hold him while they drain him. First, they stick the needle into his head (with no pain killers of any kind) and then they suck the fluid out. It has been taking about 45 minutes each day and believe me - he screams and sobs and it is horrible. And the whole time I have to hold his head up off the bed to keep it sterile and tell him to focus on me and listen to me softly talk about the house or anything I can think of. It is one of the top ten hardest things I have ever had to do so far.
Anyway, I did tell you guys that I was going to go over some of the things that have been going on here, but it's going to have to wait. I am just too tired to think of all the bad things tonight. I will try tomorrow, but there are no guarantees.
I do want to say one thing though - a few of you have mentioned that you didn't think it was a good idea for us to go home due to the 'what ifs'. I am not sure what you think is right? Do you want us to stay in the hospital for the rest of his life? I mean, there are what ifs every single day. FOR ALL OF US!!! I can tell you that we will not live in fear of all of life's bad possibilities - if we do we will miss all of the good ones. I am not saying we are just going to cruise through life without a care in the world, I am just saying that I can't worry about having to hit the brakes or if I should fall down the stairs or anything that can happen to any one of us. This is not going to be too much different than taking home a newborn baby - remember how we all worried about all of those things? But did it stop us from living our lives? Nope.
As for the possibility that we will have future problems with his head/shunt? That's pretty much a guarantee. Forever. It's something that I am already aware of and that I have accepted. It doesn't make it easy, but it's just the way it is. And who knows...maybe we will be lucky and he won't really need the shunt to work after his cranioplasty...but then again - we may need it for the next 50 years too. And in that case - it will be replaced numerous times and I will just have to be on top of my game every single minute of every single day.
I really don't know what to say other than a lot of you have jumped to conclusions based on only what I want y'all to hear.
I will be the first one to tell you that I need a break. But unfortunately, it's just not gonna happen any time soon - if ever. The sad thing is that some of you think that is why I am screaming my head off here. So not true.
Although when we first got here I thought this hospital was awesome, every one of the family members here have seen a definite decrease in the quality of care. I am in no way saying that all the nurses and all of the doctors stink, because there really are some awesome ones here, but I will say that everyone here is overtaxed and stretched too thin. There are not enough therapists, nurses and doctors to cover the caseload and sadly, they just keep adding patients to the wing. And in the last week alone, 2 patients have left and went back to Walter Reed and one is leaving next week for Dallas because of the lack of care here. It's not just me feeling like I do. Believe me!
Now I can see this clearly, so I step in and take TOTAL care of Kevin. The only thing I do not do is shower him. I do help bed-bath him on the opposite days (not enough staff to shower the patients every day even), but I have yet to go into the shower with him. I do all of his creams, all of his garments, get him ready for all of his therapies and participate in everything. I am handed his pills and I make him take them. One day, I even had to take him to X-ray myself because five nurses stood over his bed and fought over who was going to take him. Nothing like making a patient feel like a pain in the ass, right?
So pointing all of that out - there honestly won't be much difference when we go home. And the doctors do agree with me. They see that Kevin doesn't require the care that most of the patients here do. They see that everything he has achieved has been because Breezy or I push him to do it. They see that if anyone knows when to stop - it's also us. We understand him better than anyone here and when we take him to the Fisher House on the weekends, we basically do live there. He doesn't get to sleep there, but he honestly could and it would not make a difference to us.
That being said, I am gathering that some of you think I am checking him out of the hospital the day after surgery. I am shaking my head in wonder that y'all don't know me enough by now to know that I would not risk my son. Not even to have an address. I will tell you that I was told yesterday that I can safely take him home two weeks after this surgery - but I will not be doing that. I am anticipating another 3 months or so here. We still have one more surgery on his eyes and then ONCE HE IS ALL CLEAR - we will go home.
Now I am going to tell y'all a story to show each of you exactly what I mean when I say you only hear what I want you to hear. This should make y'all stop and think before believing that you have the inside track to my thoughts.
Back when we were in Texas, the first time that Breezy went home for a while, I was very stressed. More than one of you assumed it was because Breezy wasn't there to help. The truth of the matter was that over a long holiday weekend (if you guys remember this) Kevin was able to somehow pull his feeding tube, head bandages and his trach out. Now Kevin was still barely out of his coma, so it took him some time to do all of these things - especially as he had no hand coordination. Sadly, when I went in to see him the night before, he was left unattended and was picking one of his grafts off. I mentioned it very nicely to the nurse that he needed to have his arm restrained a little better. She was very rude about it basically telling me she knew how to do her job. I saw all of this from the anteroom. So when I got in the room and walked up to his bed, the pad under him was COVERED in blood. He had scratched his back raw. This was all donor and graft site and the grafts did need to be redone.
I knew when I went home that night that something was going to happen to Kevin and sure enough it did. He was able to pull three very important things out of his body.
Well, I stewed about it all the next day, but back then I still didn't voice things too loudly. But I really was upset so while at dinner I called and complained to the charge nurse. It turns out that the nurse who neglected my son was the charge nurse. I still told her that I was upset even though I was shaking with fear at having to do it. But my son was at risk and I didn't want her near him again.
Well, it really got worse. The next morning, we apparently got a close friend of hers as our nurse. From the moment I walked into that anteroom she was on my butt. She started lecturing me about how I am nobody and they are trained nurses that know more than I ever will. She then went into Kevin's room and showed me how tight she could tie him and didn't allow us to untie him even while we visited. She worked either 8 or 12 hour shifts and never once untied him the whole time - and let me tell you, his arm was tight against the rail!! FOR THREE DAYS!!! (btw, this is against the law) She also threatened to evict me from the room because Kevin was agitated and it had to be my fault. I can't begin to tell you of the horrors that she did to us during that three days. These are a few of the major things, but it was all weekend long.
During that time - no one would listen to me. Everyone was friends and they all stuck together.
Lucky for me, Maritza knew what was going on and called a friend of hers that was a colonel. The colonel listened, talked to the first nurse (the charge nurse) and saw immediately what her attitude was like and then investigated the other nurse that did so many wrong things to Kevin because she was mad at me. That nurse did end up being fired.
So did I tell you guys about this? NO. Why? Because I don't like to complain. I try to always be upbeat no matter what life throws at me. But sometimes, when things just keep getting worse and worse - I vent.
So maybe the next time - instead of thinking "Wow! She's cracking up!" - think, hmmm...there must be something going on that she just isn't sharing with us. (although I will say that a good crack up could be good for me, lol)
Now because this post is so incredibly long already, I will explain some of what has been going on here at this hospital tomorrow night. I want to go home and see Moe and Mathew as they leave in the morning.
As for Kevin - his head is still very large. He is doing better because I believe he is adjusting to the pressure. But he is eating food anyway and drinking too. He's tough so hopefully he can keep going like this until his surgery happens in a week or so.
I just don't even know where to begin. First, I was very angry that the docs just left Kevin laying in bed for 4 days while not really even bothering to worry. He didn't eat one bit of food, had nothing to drink either and his head was huge. To be honest, he wasn't even taking any of his meds. I am not sure why they didn't just change his meds to IV form, but they didn't.
So anyway, Kevin was showing signs of a constant severe migraine. He couldn't tolerate any light or sounds. This was fine because we were in a room with no roommate and I was able to keep nearly everyone out. BUT - for some reason they chose Friday to put someone else in the room with us. And to top it all off = the guy is very aggressive and screams all the time and is somewhat violent. In the meantime, they decided to take Kevin down to ICU because he was so lethargic and couldn't tolerate anything. Makes sense right? I mean we go from a controlled room where I can keep it quiet and dark to ICU where it's super bright and VERY loud. But then - there's the roommate. HA!
I went nuts! I mean, seriously? Do they not even get a feel for what these patients are like before they put them in a room with someone else? This guy is so bad that he went in to Joel's room twice. Now Joel is blind. He is very vulnerable and this guy was able to walk into his room twice? How are we supposed to feel safe here? And sad to say, but it took 4 nurses to get the guy out of there the one time. How scary is that that he is supposed to be Kevin's roommate? No flippin way, I say!
And then, we get down to ICU and they are upset because he really doesn't need to be there. He is taking up a valuable bed that can be used for someone that needs it. So they are mad that we are there. I am mad that we are there. And the chief of the hospital comes in and tells me basically - tough shit. Y'all can imagine that that didn't go over too well with me. I did tell him that he is a fucking moron and I stand by my words. He doesn't know Kevin from Adam so who is he to say what Kevin needs? It was obvious he just has the ego from hell and is on a power kick. I told him that my son is an active duty soldier and he deserves respect and he just isn't getting it from this hospital. I told him I think I made a mistake. He said 'Why? Because you are in ICU?" and I said "NO! Because we are in Tampa!" He proceeded to tell me that his staff is excellent and I said "yeah, that's why your neurosurgeons changed the process for dealing with Kevin's head and forgot to put the orders in so that no one but me knew about it? And then they went home? And of course, we have nurses that don't put the correct flow rate on the IVs and leave Kev to eat by himself and missing or incorrect meds all the time that no one but me realizes and I just went on and on.
I am so mad. But you know what? We are stuck here. Kevin cannot be transported as he is right now. And frankly - will he be any better anywhere else? I doubt it. I just wish there was some magical place that can take care of Kevin without any hassles.
This is why though I cannot leave the hospital. I have been here since Tuesday morning and have only left to get two showers and I slept the one night at home while Breezy stayed. I have had to become the nurse and each of Kevin's specialists (ie neurosurgery, dietary, psychologist, you name it). I have to babysit every department because they don't finish their job all the way to the end.
And it really sucks that Moe is here and I can't even visit with her. I haven't seen her in six months and it's just not fair. I did get Kevin into a private room that is so small we can only really have one person in the room with him. And because we were still in ICU most of today, I sent Moe, Breezy and Mathew (Moe's son) to Disney World. We were able to get free tickets and I figured it would be fun for them as I can't leave the hospital.
This all just sucks.
One good thing though - they are pushing Kev's cranioplasty to less than two weeks now. I will have Kevin out of this hospital as fast as he can get better after the surgery. I feel we will be better off and safer in our own home (assuming we have a home and that's one big ass assumption).
Well, I am exhausted and going to curl up in my chair. I do want to say that the chair does pull out into a bed of sorts, but my upper body isn't heavy enough to keep it that way. I just get all comfortable and bam - I am folded back up into a chair. It's ok though. It may not be the most comfortable of places, but I can handle it.
I am not going to be able to write anything tonight. Kevin is back in ICU and there is no internet in that room. I left Breezy and Mathew with Kevin while Moe and I went to dinner real quick and then I am heading back to spend the night with him. (obviously Moe is here to visit - yay!!)
Suffice it to say, I have been on the rampage all day. I have told everyone and their mother off. I even called the chief of staff of the whole hospital a fucking moron to his face. And he is. I am tired of Kevin being mistreated and ignored during a serious crisis. The buck stops here!!
So, hopefully I will have a chance to catch everyone up on everything tomorrow. You are all going to have to excuse my french, but this weekend it's gonna fly!
Kevin is still in a really bad way. I actually took a major nutty on all of the neurosurgeons - including the head honcho - today. They just aren't doing anything for him. They are 'pumping' or 'priming' the shunt ever hour now and it's not caused any change in the last 30 hours. Hello? I think that means it's just not working!
There answer is to do the cranioplasty in 2 weeks. In the meantime, they are going to stick a needle in his head and drain fluid out every day until then. This is VERY painful for Kevin and I have to hold him up away from the bed while they do it and he just screams and cries the whole time (about 20 mins).
You know what? I just can't even write anymore tonight. I am just too upset and I am hoping it will be better tomorrow after I get some rest. I have been at the hospital for about the last 22 hours (with the exception of an hour and a half to take a shower and go to a meeting for his VA benefits) and I am tired. I will explain more tomorrow night.
And for those reading tonight - keep Breezy in your thoughts. She is staying up there with Kevin tonight as I am just too exhausted. He will not allow both of us to leave at the same time and one of us now has to sleep at night up there with him. I feel confident that she can do it - but it's still hard to sleep in the chair and keep an ear out for every noise he makes. Not to mention the nurses coming in every hour to prime the shunt...
Things just aren't very good with Kevin right now. The neurosurgeon chose not to perform surgery because he said there doesn't seem to be a reason that the shunt isn't working. I was really pissed because the guy didn't even come and tell us that until 5pm this evening. By that time the nurses had cathed him and everything as a prep for surgery. And he hadn't been allowed to even have a drink since midnight last night. Ridiculous!!
So what he is saying is that he feels it's the brain damage not knowing there is pressure causing the shunt to not work. That just makes no sense to me. It's worked up til now - so what's the difference between last week and this one?
But regardless, they are priming the shunt every two hours for the next few days and going to see if that will work. I'm not really sure if we can do this for a few days, to be truthful. His head is already way larger than it was yesterday before they pulled the 300 CCs of fluid off. He was only awake for about 15 minutes total today since I got here (9am and it's now 11pm) and that 15 mins was because we had to wake him to prime the shunt twice already. He hasn't had anything to eat and he has taken 2 sips of gatorade when I woke him to take his pills. And sad to say - but those 2 sips of fluid caused him to nearly throw up each time. He has been holding the bucket in his hand more often than not today - even while sleeping.
So the docs answer long term - rush the cranioplasty. Although it's not a definite, sometimes having your flap (skull) replaced fixes most everything. A lot of times it regulates the pressure taking the need for the shunt away. I can only hope so because it scares me to think of having to deal with this shunt stuff for the rest of our lives. I just don't want Kev to have to keep going through this.
But anyway, they are aiming for early Jan for the plate to be placed in his head. I sure hope this priming thing works for now though. We just can't stay this way!
Well, I am going to quit for now. I will be staying at the hospital overnight tonight and I want to curl up in the chair for a little nap.
Oh - and before I forget - so far there is no infection showing up in the fluid!!
Well...things don't always work out as you plan. I got a call this morning from our nurse and had to hurry back to the hospital. Kevin's head is quite large again and the neurosurgeon actually drained 300 CCs of fluid this afternoon. He has had 2 CT scans today and we are just waiting until morning to see if he needs surgery again. Personally, I think it's already gotten larger so I am expecting for him to have another surgery. Sometimes though, tapping the head will 'prime' the shunt so maybe it will kick in overnight and all will be well again.
I knew it yesterday. I almost didn't go to the conference, but I didn't want to let Breezy down as we needed that time together. I don't regret it, not by a long shot, but I still feel bad that I wasn't here. It's just so hard having to be a mom to two kids when one of them requires so much of your time. I feel really bad for not doing more with Breezy, but it's just not easy to walk away when someone is like Kevin is. I just can't wait for him to have his cranioplasty and maybe some of these issues will go away. Then we can really get out there and do things as a family like we used to.
But, Breezy and I did have a lot of fun yesterday. We only had time to go to Epcot and walk around the World Showcase, but it was still a nice day. We really just enjoyed going to bed early as we just don't have time to do that here.
I did send her and Chrissy back to Disney World tonight too. The coalition had paid for the room and the hopper pass to the parks so I figured they might as well enjoy it. I plan to call the coalition after the event is over and see if they have any tapes of the classes. There were some I really needed to sit in on.
Well, I need to try to get to bed early tonight too as tomorrow is probably going to be a rough day. Wish us luck on the surgery and cross your fingers that the fluid they sent off is not an infection. If it is - our 6 month waiting period will have to start all over again and we are so close. SO CLOSE!!
Before I sign off - here is a pic of Kevin with Charlie Daniels from the other day:
I am going to pass on writing tonight as Breezy and I are in Orlando and we are so tired we are going to bed. How lame is it that we are in Disney World and have been in the room since 8pm napping and watching a movie? Couple o' wild chics, huh?
We had a really great day today! We have known that this group of guys was going to come for a week or so now and every day we would tell Kevin and he would shake his head 'no'. I was so worried because I didn't want to offend them thinking that Kevin didn't want to meet them. But, it turns out that Kevin just didn't believe us all this time. This is the first look on Kevin's face when they walked in the door. I think he was just figuring out what was going on:
This one is where Kevin really understood that the band was truly here to see him:
And here is kevin just grinning from ear to ear:
And here is a pic of us and the band:
And the bands name? Atreyu!! This is the band whose name Kevin first read on my iPod! When we realized he could read! They are a heavy metal band and one of or possibly Kev's favorite band!!!
I must say that this group of guys was wonderful! We had a very enjoyable visit. They actually stayed for over an hour in Kev's room and then they walked around the ward and met some of the other patients. Then they came back to say 'goodbye' to Kev and invited him to see them in concert next year when they come back to Tampa.
And to Sharrin at Hollywood Records - thanks so much for talking to the guys about coming to see Kev! You made his day - his month - probably his year! Tell them all 'thanks' again!
Now I'm going to answer a few of the questions. I am way behind.
Jessica, we received the shirt and button - very nice! I hope they work!
Kim - we did get the pics of the kids from the preschool. Kevin even pointed to his name that was on a piece of paper in one of the pics. I just love it when I can see him reading. Tell the kids 'thanks'!
Albie - we got the picture you drew of Kevin - wow! Beautiful!
Also, a few of you suggested Kev wearing a hoodie. That is a great idea. We even have a Zoo York one (skateboard company) so we will try that.
Some of you have asked when Breezy will be coming back to PA to live - we are figuring March. Her boyfriend will be home from Iraq in April and she wants to be set up before then. This is going to be very hard for all of us. The three of us are very close and I just can't imagine not seeing her all the time.
Bea (Holee) - hurry up and send those quilts, lol! It has been unseasonably cold here lately. I would've loved to have one last night (and tonight) as it's only 50 degrees here. I am told this is not the norm and I sure hope not...
Anonymous asked why we shouldn't take Kevin out in Tampa - I am thinking it's because he still doesn't have the plate in his head. Normally he would wear a helmet and be able to go out, but they can't get one to fit as his head size fluctuates daily. It is also very painful to have it rub on that sac above his ear.
Denver - the realtor will be dealing with the bank and our bid. I am leaving this aspect in their capable hands so I probably won't know who it is - at least until the end.
Barbara - I don't think Kevin even knew who Charlie Daniels was. It didn't matter to him in the least that he met him, but he was wiped out as we just came back from PT and OT. When he is tired, he retreats into himself and we all just back off and let him rest.
Well, that's enough for tonight. Breezy and I are actually going to Disney World tomorrow for the day/night. My niece Chrissy is coming to stay with Kevin. The reason we are going is because there are some classes I need to take. One is on retiring vs active duty. So we are going to leave tomorrow afternoon after seeing Kevin in the morning and then come back the next afternoon/evening. I still won't leave him for a full day as I just can't do it. I will also be skyping with him. I am really scared to leave him, but I really need to meet some of the contacts at this conference and I also need to learn from the classes. And most importantly - Breeze and I need some time together.
We had a really nice day today. We actually loaded Kevin up in the van and went to Fort Desoto in St Pete. We walked out onto the pier and just listened to the waves. We then bought some hot dogs from a vendor and had a little picnic.
After that we went to the Cheesecake Factory and bought a whole cake, grabbed another sub for Kevin from Subway (the 4th day in a row that he wanted the same sub) and then we went home and ate.
He was so wiped out tonight that he even fell asleep with the lights and tv on!
I forgot to mention that we had some visitors at the hospital this week and they were Charlie Daniels and Ross Perot. We got pics of Kev with Charlie, but we had to use Tracy's camera as mine was in the van. When she gets home she will send the pics along and I will upload them to the blog.
Tomorrow we have a very special group of people coming, but I am going to wait until then to let you know who, lol.
Yay! Kevin fell in love with the house!! As soon as we walked into the great room and he got a good look - his face just lit up with excitement! He was even trying to 'walk' his wheelchair faster to get to all the rooms. It was so funny and just outright wonderful to see.
So now we have to settle on a beginning bid and see what the bank will counter with. I kinda have a number in mind that I will settle for, but we shall see. I know he loved it - every time I asked him if he really wanted this house he shook his head yes so hard that his teeth had to rattle, lol. Let's just now hope that it is in our budget. I would so hate it if the bank didn't come down low enough!
Well, I am going to cut it short tonight as it is very late. I know there are questions that need answered, but I will get to them as soon as I can.
Yay! We made it to see one of the houses tonight! I personally thought it was very nice, but Kevin didn't really like it. We are taking him to see the one we all really liked the most tomorrow evening, so keep your fingers crossed. It would be nice if he liked it and the bank was willing to work with us on the price. Then I can put the house hunting away and move on with just getting him better.
Speaking of getting better, Kevin walked today and it was amazing! He actually was able to pull himself up into a standing position all by himself and he can even move the right leg (taking steps) quite a bit without help. I was so impressed!! He walked the parallel bars back and forth four times (taking a break between each walk). He is even getting better with keeping his head upright too. It really was something to see! I am just so proud of him!
And now for some bad news...we were told today that Kevin really shouldn't go to Disney. The docs don't really feel he is well enough to go. I am very bummed about this and in some ways I can agree with them, but in other ways I don't. I already figured that we were going to spend the bulk of the time in our room anyway, but I guess it's a moot point. There's always next year, I guess. And in the meantime, we will just keep going around town. They wanted me to not really take him anywhere even in Tampa, but that I won't do. He needs to be reintroduced to society and I can't wait for rec therapy to do it because it's just not happening.
Well, everyone please keep your fingers crossed on Kevin liking this house. This is the one that is bank owned. It was a model home that has never been lived in. I am hoping Kev can look past the green algae filled pool and the dead cockroaches and everything like that, lol. It really is beautiful, but it has been neglected for close to a year now. I just hope that the bank is willing to see my list of needed repairs and general cleanup and price it accordingly. Time will tell, I guess...we need Kevin to like it first anyway...
We had hoped to take Kevin to look at a house this evening, but it didn't work out. He was very tired and wanted back in bed at 3pm and by the time we got him back up it was just too late to go. I guess maybe tomorrow we will make it.
We did load him in the van and take him to Subway though. At first, he wouldn't go in, but I pretty much made him. I was so glad that he finally realized he had to and when he went in he actually was joking and carrying on. He even paid for his meal with Tracy's debit card. He really had a good time out and about and that's just the beginning. We are going to continue going somewhere on a daily basis - even if it's just for a ride.
On that note, I have decided it's time to buy a van with a lift in it. I have been foolishly holding off because to be honest, I just thought he would be able to walk out of here. I still think he will be able to (at least I hope so), but realistically - he will get exhausted quickly if he is able to walk so we will need his chair anyway. I am very afraid to spend this money, but I am hoping there are some grants or organizations out there to help us. I hate to be getting a car loan when we will be getting a mortgage within the next few months.
And gosh - for those of you that know me - y'all know that I have been adamantly against the whole mini-van lifestyle. I am just so not the van type of girl, lol. Even when the kids were little everyone kept saying 'get a van, get a van' and I was like 'are you nuts?'. Tracy thinks it's so hilarious that I am now going to have to drive one that she is planning on buying one of those goofy signs that says 'mom's taxi' on it. Hmph. She's crazy if she thinks that's going anywhere near that van!
How life can sure change, huh? But it's ok. I will do anything for my kids - even drive a mini-van, lol! (and no offense to any moms out there that drive them, hehe)
And to change the subject, and I am almost afraid to say this for fear of jinxing it, but watching Kev tonight - it seems like he is accepting things better now. I know the antidepressants take a couple of weeks to really work, but maybe they are kicking in early. I guess we will know more about that over the next few days or so.
And I had a really pleasant day today. Karen, one of my good friends from way back in high school, happened to be in Florida visiting her aunt with her mom. She is from PA and she jumped in her rental car and drove over from Daytona to visit. It was so nice!! We went for a nice lunch and just talked for a couple of hours. Tracy wanted to stay with Kevin which enabled me to go for a short while. I was really happy to see her - even if it was just for 4 or 5 hours!
Well, I need to get moving, but wish us luck tomorrow on going to see one of the houses...
Wow! What a day today! We did pick up Tracy and Jody and we went and looked at 2 homes today too. I have it narrowed down to 4 homes. I think really 3, but I am being open minded about the fourth. I called the van people today and picked up the van this evening knowing we can't see all of these houses in one day with Kevin. It would completely exhaust him (and me, lol). They graciously allowed us to have it for a whole week. I am really excited about it because maybe we can get Kevin used to being out in the world for a few days before heading to Disney. This only going somewhere once a month or so isn't going to make any headway on the anxiety thing.
So, I can be honest and say I think I know which home Kevin will choose. This home has the potential to be quite beautiful! It actually is beautiful but it was foreclosed on a while ago and definitely needs a good cleaning. It is a very masculine home and unfortunately it has been empty for a while and is very neglected. I am thinking this is a good thing because the bank may be desperate to unload it and may be willing to at a very low price. I can only hope, huh?
Well, who knows...Kevin may surprise me totally and go with something totally different. So many of his tastes have changed since the attack. I shouldn't even begin to guess what he likes anymore, lol.
I guess I better head to bed. I will be so glad when we settle on a house and I don't have to drive all over the state of Florida in the middle of the night!
It was another pretty good day. We didn't make it down to the house until this evening, but it was still overall a good day.
Breezy and I went and looked at a house this afternoon and we left Kevin with a sitter. During that time, he did refuse PT and only allowed half of his time of OT, so it looks like either Breezy or myself needs to be here to force him to do these things.
Unfortunately he will be left alone again tomorrow for a while as we have to run to the airport to pick up Tracy and her husband and then we need to run out to look at another home. I think I have it pretty much narrowed down and am planning to take Kevin out to look at the one community and the homes I think he may like. We will be getting the van again on Friday as we go to Disney on either Sun or Mon, so I figured this is the best time to go.
I'm a little worried about the Disney thing. So far - he is truly refusing to go. I sure hope he changes his mind. There was a lot of work and expense involved by the Coalition to Salute American's Heroes and I hate to see it being wasted. Surely, surely he will go...
I am going to hit some of the questions for now and then head home:
Jessica - all of the soldiers here would love to get Christmas cards! Send them on!!
Em - I really like the idea of putting his Airborne flag over him. We might just do that!
Anonymous - I will try to mention the communication board. I don't know why that hasn't been offered, but I am sure there is a good reason...
Alison - you thought we could get a sitter to sit with Kevin while we house shopped and that's basically what we are doing. We have been riding around at night to weed out those that we don't want to waste daylight hours on as we are limited on how much time we will leave Kevin.
Selma - I will contact you shortly. I have company coming in tomorrow so it may be a few days or so. If I forget - remind me. I am the dumbest I have ever been lately...
Ok, gotta run. One more house to drive by tonight.
We had a really good day today. To be honest, we all lay around and watched movies all day. Matter of fact - here is a pic of Kevin sitting in a real chair! It's the first time he allowed me to put him in the chair without Barb - our physical therapist.
And being funny - here is a pic of all of us lying in his bed at the hospital. This one was taken the other day. Anyway, we got busted by the nurse and she's cool so she took a pic for us.
Matter of fact, the same nurse that took this picture is also going to Disney World with us next week. We are hoping to stay 2 nights, but we may only make it one night. At this point, Kevin is very conscious of what his head looks like so he may not want to leave the room. If that happens, we will make the best of it - but I sure hope I can get him out of there. It's going to be hard though as he can't ride any rides or anything, but we can just take in the sites and eat, eat, eat! I think there are a couple of shows though - I just haven't had time to research it yet. This house hunting is taking up all of my time.
Well, off to bed for me...I will answer some of your questions tomorrow night.
Poor Kevin. He had a really rough night last night. Apparently his sitter fell asleep and was snoring so loudly that he only slept about 2 hours. The charge nurse somehow caught on to her being asleep on the job and removed her from the room twice. The second time - he had her terminated from her sitter position. He forced her to leave and he stayed in the room with Kevin the rest of the night.
I am really happy to say that Kevin is becoming better able to communicate as time goes on. He still doesn't talk much - but he is understanding things more, making it easier for us to play 'charades' to figure things out. He was able to explain to us that he only got 2 hours of sleep and he would snore so loudly showing us how bad she was.
And yesterday the nurse took his deodorant to the shower and left it in there. Kev was able to 'tell' me that too. I loved it when she argued that she brought it back and when we had her look to make sure - it turned out Kev was right and it was still in the shower room.
He is just becoming more and more observant. Super great, huh?
Other than that, nothing much happened today. We had a nice leisurely day at the house. It was funny though because he was flipping the channels and the car chase scene from Bad Boys II was on and we were all pumped to watch it and didn't we get all engrossed and after the 5 minute scene was over they started talking and it was in Spanish, lol. Me and Kev just looked at each other and burst out laughing. Obviously - we had to turn it.
So that's it. Breezy and I just came back from a ride out to scope out a house. We only have time late at night to weed out anything that's not right for us after viewing homes online. This home was just beautiful and it was already handicap accessible, but the area was dried up and desolate. It was also along a major 8 lane highway and was already loud at 12:30 at night. I can't imagine it during rush hour. So that one's a no-go too. We will be spending a lot of time at home so it needs to be somewhere where you can hear yourself think...
Not too much happened today either. We did manage to take Kevin off of the high blood pressure medication and although it was slightly elevated this morning - it's been fine for a couple of days now. That is such a relief! I hated to see him (or anyone his age) on that stuff!
Kev's buddy Ortiz came to visit again today too (from the dinner a couple of months ago). Kev's face just lights up when he sees someone he knows. We all had a really nice visit for about a half hour or so. He is here for about 2 weeks so we expect to see him more often.
So I did do a very small amount of Christmas shopping this afternoon. We don't have anywhere to put anything and with money being tight and us needing to buy a house, I am just not buying hardly anything. However, my friend Jeannie suggested I buy Kev a skateboard that he can roll back and forth with his right leg. I thought that was a super idea and purchased one today. This will hopefully spark a memory and also help with a little bit of physical therapy on that leg. I sure hope he likes it! Boards are such a personal thing...
And of course I can't mention anything I bought for Breezy as she reads the blog so...
That is going to sum up my post for the evening. I just put some meatballs in the oven so that I can make spaghetti tomorrow for dinner and I need to go back and check on them.
I hope everyone had a great Thanksgiving today. We had a nice dinner and both the food and the company was great. I still miss not being with my family, but that's just the way it is. I suppose I am going to have to get used to it because we will not be living near them for a while.
To be honest, I do want to say something about the doctor's suggestion that we stay where it is warm - at least for a couple of years. I have gotten a few personal emails from people upset or just not understanding why we are going to be staying here. First, I do understand that there are people out there that have burns and live in colder states. That's just great for them and I am glad they were able to do that. Kevin isn't. He really isn't. This isn't me snubbing any person or any state or any town.
I think it's a pretty safe thing to say that each patient is different. The doctors and I are basing all of our decisions on Kevin's patterns and needs. We see Kevin violently shivering when his room is under 75 degrees. We see him moaning in pain when the water is only lukewarm in the shower. We see him not touching or eating anything cold anymore. There are a whole slew of things that we are seeing that frankly - the other patients may not have done.
And we can't actually say why Kevin can't tolerate the cold. He can't tell us. And yes - it probably is mostly from the burns. Maybe even all from the burns. But it could be part of the brain damage as well. We also have the issue of a weakened right side. Even with his room being so hot, his right leg and arm are usually ice cold. It doesn't matter that he has garments on, socks on and a blanket - he is cold.
So I think I am going to ask that everyone trust me to do the right thing for my son. Please know that I don't actually want to live in Florida and I can assure you that this is not easy. I would love to be able to go home and have some help. Breezy will be going back to PA to live shortly and it would be really nice if I could call a family member or friend and say "hey - can you come over and spot me for an hour while I get a haircut?".
Lastly - even if Kevin wasn't burned - we still will not be able to go home to PA for a very long time. Kevin needs to be within 30 minutes or so from a Polytrauma VA unit - at least for a while. There are 4 in the country that handle his place in recovery right now. The closest one to PA is Richmond, VA, but it actually costs more to fly there than to Tampa (strange, but true).
So there it is. I am laying it all out on the table. Once again, I ask that you all trust me. It is my goal to have Kevin in a home environment within the next 4 months and we will not be able to go back to PA at that point so we are staying here in Tampa near the best brain injury hospital in the country where the palm trees sway in the warm sun.
So who wants to come spot me for a bit while I go get a haircut? It was a beautiful, warm and sunny day here today...lol...
Today was a slightly better day. We still had our 'off' moments, but we had some good ones too. We did learn today that Kevin is able to read more and more as time is going on. He still has trouble putting words to pictures/meanings sometimes, but it is getting better.
We also had PT down at the house today. We practiced transferring Kevin from his wheelchair to a comfortable recliner. Y'all should have heard the sigh that came from him when he landed his butt and sunk down in that easy chair for the first time. It was like he was in heaven!
And let me say, he did very well. I barely had to lift him up from the chair - he did the bulk of it himself and he also pivoted himself so that he was turned to go into the other chair. We are going to work on transferring to the bed on Friday if all goes well. If it does, he may be able to stay here for the night!
I am going to just answer some more of the questions for the night as I need to get to bed.
First, Jessica - you asked how Kevin was able to 'tell' me that he had been moving his arm on the sly...well, I can pretty much always read his facial expressions. When he showed me his arm moving, he first said "hey" in a matter of fact way. That was my first indication. If he woulda sounded shocked, I would have known he was. Second, he had this look after he did it of pride and guilt and just plain devilment. As soon as I saw it I asked if he had been moving it for days. I could just tell, lol.
Kathy - you asked about the therapy on his arm vs leg. He actually gets more on his leg because she is a faithful therapist. OT (arm therapy) has not been as good about being there every day. We also just lost Kevin's usual therapist about 3 weeks ago or so and Kevin is just not 'relating' to the new one. I think it's just because we really liked Jeremy.
An anonymous poster asked about a communication board or book and NO - he doesn't have one. We can pretty much tell what he wants - it's only on occasion that we struggle. The last couple of days he has been making this little "O" with his fingers - kinda like an A-OK sign and I just couldn't figure it out. Tonight - Breezy finally did. He was actually telling us that his show was over and it was time for his pills. The little circle he was making represented a round pill. We sure love it when we figure out something new, lol.
So I am going to end there for the night. I am still scouring the web for homes and want to get a half hour or so in before shut eye. It's my goal to narrow the search down to 5 or less and then take Kevin to each of the homes and see what he thinks. We have been showing some of the ones we like online and so far he really loves one of them. It's a bit more than I am hoping to spend though so we will see. I also have to see if there is some sort of temporary ramp that I can borrow to get him into these homes. Every single home here has steps to get inside.
Yesterday was a really rough day. Kevin actually had some sort of meltdown in the morning. Breezy had went in and said he was just in a foul mood since the time he had woken up. Nobody knows why, but he just kinda snapped and started screaming and crying. It was so bad that everyone came running. They had to take Breezy from the room and dope Kevin up to calm him down. I am not sure if it's part of the depression or if it's just one of those TBI (traumatic brain injury) things. Regardless, it freaked everyone out and Kevin is now on anti-depressants and seeing both a psychologist and a psychiatrist.
I can say that one of the things that Kevin is having trouble dealing with is the amount of pills he has to take every single day. We talked to the doc again this morning about it and we have eliminated 9 pills from his daily regimen. Every time I hand him the cup full of pills he got so upset - today he looked relieved to see less in there each time he was scheduled for pills.
One that I don't think is going to work though is the pain medication. We put him on a new kind that is a patch and I don't think it's working as well. We have had to give him additional pills every 4 hours all day. We were getting away from that the last couple of weeks or so. That's just something we have to discuss tomorrow, I guess.
And now I am going to end this post with some truly great news! Kevin began moving his right arm today!! He 'told' me that he has been doing it on the sly for days (or at least feeling it move) and during our happier moments of the day, he was really excited about it! I am going to take this as a good sign!!
Now I need to run to Wal-Mart to buy food for Thanksgiving. About 9 of us are getting together here for dinner and I am cooking. This is going to be my first thanksgiving away from my family so I hope I can handle it. We are all so close and it's hard to not be there. And I miss my dad. I have seen every other member of my family during the last 6 months, but not him. I sure wish we had a home already and could have everyone down for Christmas...
We had a better day today. Kevin didn't seem to be as depressed as he had been. We had one little instance where a girl of about 10 years old or so started crying when she saw him tonight, but he just ignored her. Or maybe he didn't comprehend why she was crying - I am just not sure.
Other than that, Kevin allowed me and Breezy to go see a community that we are considering living in. He stayed with his favorite sitter all afternoon and they watched "The Goonies" with two of the other patients and I guess they were all laughing their butts off. I just love to hear that.
The community is very nice - they all seem to be though. It has a very nice fitness center (which he can definitely utilize) and it's on a wildlife preserve so it almost feels like East Brady. I was pleased to see a bunch of teenagers playing football in one of the parks and it was overall very quiet there. This development is in the beginning stages, but they intend it to be a whole town at completion (with 8500 homes over 15 years). One thing I really like is that they will be having a community hospital with acute care built in the first quarter of 2009. In an emergency, we can go there until they can get us to the VA hospital here in Tampa, which is about 25 minutes away. The homes there start in the 170's and go up into the millions and I think it's safe to say that we are going to be on the low end, lol.
So anyway, we did tour a couple that were already pretty much handicap accessible (shower and front steps only need changed), but they were in the 500 - 800 range. Ha! We just walked through those so that we could drool. Man, I sure wish one of those were in our budget, lol!
And now I am just sitting here waiting for Kev to go to sleep. It's just shy of midnight and I am not seeing it happening anytime soon. There is a ROCKY marathon on and him and Vinnie are both watching.
So, I am going to hit a few more questions:
Ben - Kevin doesn't seem to remember names so I can't say if he remembers you or not. You also asked if we could maybe stay here until he is ready to come back to PA. That's more what I am thinking, to be honest. I am hoping we can do that, and if not, maybe we can come back to Brady for the summers at least. No matter where we end up, East Brady will always be our home. I also looked up the Wounded Warrior Bill and thanks for the info.
Lisa in Minnesota - I love the idea of Kev talking to other guys that have went through what he has, but unfortunately there really isn't anyone here that can do that. This hospital ward here is probably the most devastating ward in the country. I mean, you can get a prosthetic for every missing limb, but there's nothing you can do about missing brain tissue. And Kevin is honestly one of the lucky ones. Most of the guys here are way worse that he is. Maybe somewhere along the line someone will come in though and be in the place to help Kevin like that - who knows. I wish your step-son good luck in making the decision to join the Army.
Jodi - good idea on having someone that Kevin looks up to come to get him to snap out of it. I will have to give that some thought...and before I forgot - on Veteran's Day, you posted a short note to Andrew and hoped I didn't mind. Of course I didn't. Andrew, James and Dan will forever be in our hearts - along with all of our fallen and wounded soldiers.
Miss Em - great idea on having someone get my photos. I will have to try to find out where my storage unit is located and go from there. Ooooohhhhh Moe...can I ask a favor?
Martha K - thanks for calling Senator Casey's office for me - I will contact him soon myself.
Kristen - I had never heard of General Anxiety Disorder, but that is so what's going on. I kinda figured it would wear off once we are out in public more and it's not such a big deal to be. I'm glad it all went away for Travis! Say "hi" to him and everyone at work!
Ok - enough for tonight. I think he's sleeping so I can sneak on home...
Not a whole lot happened today. It's Saturday so it was just a nice quiet day. We spent about 9 hours or so at the house just watching tv, playing Wii and eating (of course, lol) - we even all took a nap!
Breezy and I have spent quite some time scouring the net for homes. I found out yesterday that the $60K housing grant is now able to be given to active-duty members. That means that I don't have to even think about retiring Kevin yet. Phew! What a relief!
Now I just need to sit down and decide on whether to take the grant or not. With it comes a whole slew of regulations - like the fact that you need a minimum of 3000 sq feet. To have a house that size is quite expensive! It may actually be cheaper to forgo the grant and just buy a smaller home. I have a meeting with the VA Adaptive Housing rep on Tuesday. I will wait to make my mind up until after I hear what he has to say and once I look around a little more.
So I am going to hit on a few of the comments/questions I need to answer:
Craig - we got your wedding invitation. I read the letter to Kevin and he was grinning. Thanks for inviting him! Congratulations and good luck! Oh - and we would love the pic of Kevin. Please send it to email@example.com
I would like to ask that everyone ignore that email address. I rarely check it and don't have time to handle any more email. Truthfully, I can't even handle what I get now. BUT - if there is something I need to know, feel free to use it. Just please don't expect a reply.
To everyone with advice on the cockroach situation - they moved Breezy to another room. Unfortunately they bombed the room she was in without giving her a chance to move all of her things first so we had to throw out all of the food and things. Grrr! We did go buy all new plastic containers and she sprayed all around the new room today. Hopefully all of this will help keep them out of this room!
Jessica - you asked for Kevin's shirt size and he is having to wear a medium right now. He also would prefer short sleeves - so far it's very hard to get even that on his right arm as it's hard to bend.
Ok - there are still about 50 email posts that I need to hit, but I am going to do them little by little. Some of them are just advice on the retirement thing and I will file them for future use.
Now I just want to ask one more question for anyone who knows the answer...is it possible to have Kevin's Purple Heart ceremony anywhere I want it to be or does it have to be in a hospital environment? Although this is just an idea at this point - I would like to have it next summer in East Brady. That community, and all those that surround it, deserves to be part of the event as they are all the reason we have been able to be here to help Kev through all of this. When I received the award in the mail from Germany, I stuck it away for it to be presented in the correct fashion and I really think this is what I would like to do. But - am I able to? Or not?
Once again, some GREAT news and some bad news. First the bad - depression has really set in for Kev. It is a major effort to get him out of bed. He just wants to lay there and sleep. I asked him today what was bothering him and he pointed to his 'dead' arm first, then his head, then the burns on his neck and last his whole right side. I try to always point out the positive, but he's just not listening. The psychologist wants to give it two weeks to see if he comes out of it on his own, but I know anti-depressants take roughly 3 weeks to kick in and by then it will be 5 weeks of him being like this. It has been getting worse every single day and I'm not sure we can go 5 weeks without aid. Gosh knows I hate to put him on another pill, but this one might be one that we need.
Moving on to the fantastic news though - I pretty much forced Kev to go to PT today and Barbara then forced him to take his first steps! Yes, Kevin walked 6 steps with the help of the parallel bars and the therapist! He was so excited and proud of himself! He did really well and he even let go of the bars sometimes. He did get nauseous toward then end, but that was ok - we had the bucket ready! Here are some pics of this huge milestone:
Now I need to sign off. It's almost 11:00 and Kevin is still here at the house. We have totally escaped since about 5:00 this evening. I am hoping that he can stay overnight here with me by next weekend. We just need to work on transferring him from the chair to the bed and then we are good to go. The therapist thinks he will be able to do this on his own within 2 weeks if he comes to therapy every day. I sure hope so as we go to Disney World on the 8th of December!
Breezy and I went to see The Phantom of the Opera today. It was pretty good - for me anyway. Breezy fell asleep, lol. She really hated it. Kevin was originally supposed to go with us, but apparently he remembered the other day that he just isn't into things like that. Darn! So anyway, he chose to stay at the hospital with his sitter instead of go. This was the very first time that he was aware we were going to leave and he was okay with it.
He did have a good day though. We went to the MOAA dinner tonight and he went along. That's the one from last month where he remembered Ortiz. He had a good time, but it was very overwhelming. So many people coming up to him. We also took Vinnie with us. That is Kev's roommate. They get along really well - they play off each other and they even arm wrestled yesterday. It was so funny. Here's a pic of the kids with their thumbs up:
Other than that, nothing really happened today. I do have to tell you guys that Breezy woke up this morning with a cockroach crawling on her arm. She has been seeing a lot of them lately so I am sure her room is infested. They are moving her to another room, but it's not really going to matter. The whole place is crawling with them - this is going to be her 4th room. And the one time she complained at the front desk - they handed her a can of bug spray. Seriously! I really don't understand how the Army finds it acceptable to put the families up in a dump like that. I understand they have a contract and all, but it's still just not right. I can only bet that none of the families lived like that previously.
So, I am just going to end here tonight. I want to go to bed kinda early as I am just tired today. I still haven't made any decisions yet on the retiring thing as I still need to research. I guess I can safely say that my decision probably won't be made real quickly though. I do want to thank everyone for sending all of those links to sites with information and for all of the advice. Truly - thanks!
We had some great things happen today. And we had one not so great thing happen too.
We will start out with one of the good things - a huge "Thanks" goes out to Steve K for helping us with Kevin's pay issue. I was told that you called the liaisons here at the hospital and everything was all figured out. Miraculous, huh? I already knew that from talking to you, but it was still nice to hear them admit it. And let me tell you - I had no idea just how badly they had his pay messed up! I told the bearer of good news that I want a meeting set up for next week where all of his pay, from the day he signed up through today, is explained to me. I am gonna be a professional military financial adviser by the time that meeting is over! Thank you so very much! That is just one less stressful thing off my plate!
And now we will hit the kinda bad thing (which is sorta a good thing too...). Kevin has realized that things aren't right with him. He just now understands that things are different than what they were. This is a good thing only in that he is progressing and it's just one more step toward recovery, but it's horrible to watch. I watched him cry last night as I handed him his meds and he had to swallow 7 pills. He's always had to swallow at least that many pills before bed, but he must now understand that he didn't used to have to take them. I think, up until now, that he just accepted his lifestyle as if it had always been this way. And tonight Breezy came into my room with him from the dining room and told me that he was crying because his arm/hand won't work. Again, he has known all along it didn't work and was fine with it, but he's very upset now.
I actually knew this was a step in the process, but I had so hoped it would wait until he could talk, until he could express himself. It is so dang hard to guess what someone is feeling and thinking and to help him through this is going to be one of the hardest things this ordeal will involve. The last thing I want to do is introduce emotions or thoughts that he isn't thinking of, but how else will I know if I hit on what he is upset about at the time of our discussions? Boy, this sure is going to be tough...
So now back to the other good thing...are you ready? I mean...really ready? Kevin had his feeding tube removed today!! YAY!! The poor kid was so scared (another new thing - fear of upcoming events) because they can't really do anything but yank the thing out. Man - I could tell it was painful for him. But you guys just can't imagine how happy he was to get it out! He pointed out the hole in his belly to every single person that walked in the room. He was just so happy about it!
Kevin also came out with the phrase "No way" today. That was pretty exciting! He says it clearly (for the most part) but we learned today that he doesn't know that I am mom. He can say mom. He just doesn't know that I am to be called that. I think he remembers that I was always there as he was growing up, but there really is no way to be sure.
And a friend of ours, Lisa O, sent us some pics of Kevin when he was maybe 5 or so? He was with her son Patrick and they were dressed up like knights. Kevin stared so hard at those pictures and then all of a sudden said "HEY". He got that gleam in his eyes and you could tell he remembered. Thanks so much for sending those Lisa.
Please, if anyone has any pics of Kev through the years, please send them along. I could kick myself for not having mine brought down before the movers came in. It would have made such a difference to show him things instead of just talking about them. But, I just didn't think of it.
First, I guess I do need to point out that the reason Kev can't tolerate the cold weather that well is due to his burns. You must remember that he still needs to grow some layers of skin and I am told that that can take a long time. Years sometimes.
Second, no one has approached me about Kevin retiring. Not one person. I was just told about the $60K housing grant that is out there, but Kev needs to be retired to qualify for it.
Third, it's not that we were told we CAN'T go home - we were told it may not be in Kev's best interest to be in the cold weather. Huge difference. So please, please don't think I am saying that all wounded soldiers need to move down south.
And I do realize that we can keep him bundled up - but remember - his WHOLE face was burned. It's impossible to keep his whole face covered - and frankly, what kind of life would that be if we could?
Believe me when I say I don't want to move here. But if I look at Kevin's needs first - he needs to be where it's warmer. And as an FYI - let me point out that when the heat is turned down to 70 degrees in his hospital room - he is shivering. And I am not exaggerating - he is literally shivering. He is cold if it is turned below 75.
So this isn't something that I am just lightly making a decision on. Kathie in Brackenridge mentioned that she could tell that I have been discouraged lately and she is partly right. But even more, I am just sad. I am sad that this has happened to my son, my daughter and myself. And I am sad that we have had to give up everything that we have worked so hard for - our home, our jobs and now even our friends and family being nearby.
But, that's just the way it is, I guess. Some people have an easy life...and others don't. We just happen to fall into the wrong category.
So, that being said, I have tons of info to look through from everyone that posted a comment. I did talk to Steve K and we plan to talk again soon. I was so glad that I actually had the time to talk to him today as Kevin was sleeping. I know there are lots of questions and comments, but I need to shift through them before responding.
And now moving on to some truly fabulous news on the Kevin home front...I had to miss his PT today to return the van we borrowed and Barbara (his therapist) made a special trip back up to see me. She was so excited that she was nearly dancing around. It turns out that Kevin showed her today that he can move his right leg and he has some control over it! She informed me that she has no doubts whatsoever that he will walk out of this hospital - maybe even in the 4 months that I am reaching for.
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...
This blog is dedicated to my son, Kevin, who was critically wounded in Afghanistan on May 31, 2008. My daughter, Brianna, and I left our homes and our lives to be by his side from that day forward.
Here is where you will learn of all of our accomplishments as well as the trials of his recovery of such serious injuries.
Although we have come through the acute stage of his burns, we are now focusing on the rehab for his brain injury. For those of you unaware, Kevin has lost nearly 85% of the function of the left side of his brain, causing him to not be able to do much (yet) with his right side and he can only say a few words so far. He also has to learn to write and he needs to remember everything in his past life.
Basically, we have 'started over'.
Email us at firstname.lastname@example.org, but please understand that there is very little time for responses. We wish we could email everyone a reply, but it's just not going to happen.
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