I made it safe and sound to my mom and dad's house (our house too) and got the car all loaded and packed to leave in the morning. It is so nice being with my parents, but wow - has my dad lost a lot of weight. I worry so...and really hate being away...
So they are hoping to come visit us soon and I hope they can. I'm not sure when dad starts his next round of chemo so I guess we need to wait and see about that.
And after reading last night's post again - did anyone catch that I spelled brakes wrong? Geez...I must have been more tired than I thought, lol.
Ok, I am signing off early and getting to bed. I have a long couple days ahead of me...
I was on the phone most of the day with the VA and various case managers. It turns out that we are only getting 15 hours of the aide a week like I had originally posted. I guess I have 30 6-hour days of respite care available in case of an emergency (or if I want to go on vacation or for whatever reason) and someone assumed that I wanted to use 2 days a week of that, giving me 25 hours. I'm not really sure who made that assumption, but I sure don't want to use emergency days up. With my dad being sick, it would be irresponsible of me.
We also have an 'emergency' of sorts going on right now. Breezy took her car to have her breaks fixed because she was tapping the floor every time she needed to use them. It turns out that - because the car sat in PA for a year or so (without being run at all) - the whole underside is nothing but rust. The mechanic she took it to said he wouldn't want his sister getting in it so I am flying to FL tomorrow to bring the other car to TX. It is just not in our budget to buy anything right now and besides that - she hasn't worked long enough (post Kevin's injury) to get a loan. So I leave in the morning, spend one evening with my parents and then drive 17 hours back to Texas. I'm not afraid of driving by myself, but I do wish I had someone to ride with me. I know how tired I am and that is the only thing that worries me.
But it is what it is. And this will enable me to get a bunch of things that we need from the house.
So Joseph, the aide, will come and sit with Kevin tomorrow until Breezy can get here after work. She will stay with Kevin the rest of the weekend. Joseph did come today again, but Kevin was pretty mad all day. He wants to go home to FL and assures me that he can handle the car ride, but we all know he can't. Besides that, I don't think he can even handle the flight. He can barely sit up in bed without screaming in pain. Can you imagine take off and landings? No way.
And now I really need to get to bed. I will say that I slept like a rock last night. It was just so wonderful! I sure hope I can do it again tonight...
Thanks to everyone for their support and kind words. I can't even begin to explain how the comments keep me going sometimes. When I hit a low, I just hear your words and it prods me into 'wiping the sweat and driving on' (in the words of a member of The Herd).
So an aide came today. Now you just can't imagine how excited Kevin was when he showed up with a Steelers tattoo on his arm and a Steelers bag with his tricks of the trade inside. You should have seen Kevin's grin, lol.
And they did hit it off pretty well. Kevin actually got up and gave him a tour of the apartment and then they watched some TV together (Spaceballs, I think). They discussed music and it was nice to see Kevin up and about for a while. I was really happy to see the guy not minding that Kevin needed quiet and to lay down for a while too.
After he left, Kevin took a nap for an hour or so and we decided to go to the mall. I am struggling to find things to do with him that are really close by. Tomorrow, I plan to scope the area out once the aide gets here. I am told he will be here 25 hours a week and that is even better than I thought. I DO plan to get out and do things at least twice a week - even if it is only an hour. It is one of my goals to get Kevin as independent as I possibly can. I am hoping just having a 30 year old male around may help as well, but I am going to truly leave the apt as much as I think Kevin can handle (or maybe even nap? Egads!).
And now I am seriously going to bed. I can only hope Kevin will allow me to get some sleep. My eyeballs hurt and I have this thumping headache tonight, which is very unusual for me. I can only assume it's because I am working my butt off trying to get an audit done for both the court system and the VA. I have been entering transactions into Quicken for days now and I am nowhere near done. Maybe having the aide here will help me complete it. Truly - I just need some uninterrupted time to get it done...
Today we actually made it to the movie - YAY! It was a pretty decent movie and we both really enjoyed it.
That's pretty much it for today though. We really didn't do much else.
This would be my normal post of the day. Sounds pretty boring and easy, huh?
I had a long talk though with one of my friends today - someone that I haven't spoken to in many, many months because there is just no time for me to be on the phone with my friends/family. She told me that although she knows the reality of the situation - I am painting too rosy of a picture and others are not seeing it clearly. I am letting people believe that we have 'boring' days when truthfully, our boring is nothing like your boring. I am letting my friends/family/readers think that we are living some kind of wonderful life when you couldn't be farther from the truth.
I never really thought about it that way. Mainly because, in order for me not to have a nervous breakdown about how horrible our lives really are, I NEED to stay positive. I HAVE to end the day thinking of the half hour or so of good moments we had. Yes, the HALF HOUR or so of good moments.
You see, when I say we had a good day, in truth that just means that for 30 minutes (or whatever short amount of time) of the day Kevin and I were normal - your normal - not ours.
This, my friends, is what I could be writing. What REALLY happened today:
I finally fell into bed at about 5:30am. Kevin just doesn't sleep and although I try to stay up with him, I just couldn't stay awake any longer. And I wish I could just fall asleep immediately - you would think I could, but I never can and many nights I don't sleep at all.
I lay there thinking about my parents and my dad's cancer, about money and how I am going to survive if this bill doesn't go through quickly, about how much I miss my friends and the ability to just jump in the car and go somewhere. I toss and turn trying to find ways to help Kevin get better faster. Or even to get better at all. I cry because I don't want my son to go through what he is going through. I hate that he is in CONSTANT pain - and it never goes away (there are just varying degrees of it). I think of Breezy and how devastating this was for her and how many days she can't bring herself to smile - even with all of the positives in her life right now. I think about how people assume they know what we are going through, but really have no idea. I sometimes am too angry to sleep - not at Kevin - never at Kevin - but at the system and my constant need to fight for everything.
All of this - and it's still technically the night before my day even begins.
So I did probably fall asleep somewhere between 6 and 6:30 and I got my first phone call at 7:13. It was Kevin. He needed his fan turned to speed 1. I zombied it to his room and took care of it and crawled back into bed. I got more phone calls at 8:26, 9:15, 9:42 and 10:28 - none of these Kevin. This was a good day as sometimes it rings non-stop.
I did just stay up with the 10:28 call and started the day. Kevin was up - I don't know if he ever went to sleep or not - probably not. Since he heard me - the MOMs began. To throw some hilarity into this situation - here is what Kevin is like:
Sadly, it really is a lot like this.
So we were going to go to the movie and I got Kevin up and moving. He went into his closet to pick his clothes and I jumped into the shower. Within 4 minutes he was screaming in pain so bad that I could hear him over my running water. So I jumped out to get him some pain pills and then I jumped back in, finished conditioning my hair and got out and dressed.
At this point, I didn't figure we were going to the movie. We needed to leave in 30 minutes to get there comfortably and Kevin takes A LONG TIME to go anywhere. The movie theater is 15 minutes away and we need to leave 60 minutes before the movie starts.
So he lay in the dark in his room and after 30 minutes the pills still didn't help his pain at which time I gave him some Tylenol to help the oxy's along. It was already time to leave. About 20 minutes later, Kev managed to get up and get ready to go. It still took him another 20 minutes to dress and brush his teeth and by the time we made it to the car the movie was going to start in 20 minutes. He still wanted to try to go because it had been 3 days since he left the house and he was going stir crazy, so we ventured out.
I only had to pull over 1 time due to his nausea and since we have these tablets that dissolve under his tongue to combat that, we popped one in and away we went. He was still sick, but we made it without any vomit. Huge sigh of relief.
I dropped him off at the curb and went to park. He was still only halfway to the door by the time I was done and I ran past him to get the tickets. I also went to the counter to get his ice cream and drink. By this time he made it in and I pointed him toward theater 17. As I juggled everything, we finally managed to get to the right theater and it only took about 6 minutes or so to walk there - roughly 150 steps. Do I complain? NO. I just patiently walk beside him. I am so proud that my son CAN walk to the theater by himself. A miracle - and we all know it!
(he moves much slower without the plate)
Once we got in, we have to go all the way to the top and we have to sit at the right of the theater. If we aren't at the top and to the right, Kevin can't see the whole screen. Losing half of his vision has created a whole bunch of situations that you wouldn't normally think about.
(and thank goodness there are always so many previews! by the time we got situated the movie was just starting!)
After the movie, we got back in the car. We took more pain pills and headed to Walmart. Kevin stayed in the car because he was too sick to get out, but he demanded ice cream - our whole reason to be at WM. He wanted more at the theater, but we just can't afford it at those prices.
So we did get home without mishap and Kevin immediately went to his room. The MOMs are still continuing and will until I drop into bed. We got supper and Kevin actually was able to stay at the table long enough to eat it. He usually can't sit that long and he ends up eating an hour later in his bed (after his head has stopped hurting so much). I should also mention that I can't cook anything that requires me to stand at the stove. Kevin needs me constantly and I would burn it all if I had to stir anything all the time.
So I guess I just wanted everyone to realize that although I say our day was great and/or boring - it's in our way, not yours. I grab hold of small bits of the day and try to focus on them so that I can get out of bed the next day. Those moments are something precious to remember. It's either that or I can repeatedly think of all the MOMs and the suppositories and the crying and need for so many medications and the screaming in pain and the ball and chain keeping us in the house and Kevin's inability to talk and really - I could go on an on.
But let's not, ok? Let's just say that we went to the movies today and it was a great day. We had ice cream and popcorn and sodas and for ninety whole minutes we were mostly able to forget what happened...
We didn't really do much today. The home health company came out to get us admitted into their system and it looks like they are also going to hire someone Kevin's ageish that has some of the same likes/dislikes. In the interim, they are going to just send someone else out and it appears it will be for about 15 hours a week. This is a good amount for now as Kevin really doesn't feel well enough to go do much. I am going to strive toward getting out for at least half of that time each week too. It's the only way to keep going forward on the separation anxiety thing.
My main goal though would be for this person to take Kevin out and do things, as well as play games and do other things with him at home. Like I've mentioned before - just someone to be his 'friend'. I sure hope this company is better at hiring than the last company, lol.
And I know my posts have been short lately, but there really isn't much to say. Kevin is very limited in the amount of time he can stay out of bed, so our lives are pretty boring right now. We are hoping to make it to the movies tomorrow...wish us luck...
We had another really good day today. Kevin actually got up and played Skipbo with Breezy and Chris first and then I joined after I came home from my little ride around the area. I am actually going to skip writing much tonight, but I will leave you with this video of us playing cards. Kevin was in fine form, lol. Truthfully though - he couldn't comprehend this game back in Oct when we tried it, but tonight he creamed us both games. And we didn't even go easy on him!!
Hey Moe! I hope you're up for some 'kill your neighbor Skipbo' when you come to visit - we can't have him winning like this!
Today was really a great day. Kevin felt well enough to head to Target shopping (I had to return a blender that when I opened it was used and dirty - yuk!) and he did fantastic the whole time. I was very proud of him because he wanted a slushee and I made him get it himself so he wheeled up to the counter, pointed at the picture and paid for it. I really need to get back to cognitive therapy and pushing him to do more, he just hasn't felt well enough for me to really push him lately.
After we got home we had a nice family dinner with Breezy and Chris. They are coming again tomorrow and I am hoping that I can get away for a little bit. It's been a while since I have been apart from Kevin and I need to break away for an hour or two to recharge.
And tonight I have been watching "America's Best Dance Crew" and it just reminded me of when Kevin was really young and he was break dancing in the talent show at his elementary school. I sure wish I had filmed that event. He was so dang adorable and so dang talented. (remember that, Breezy?)
And now I think I will head to bed. Before I forget - Grant - I don't know if we will be in East Brady for Riverfest or not. Kevin will be having surgery I think in June and again in August so I'm just not sure about us traveling in July. We'll see though.
We tried to go to the movies again today, but Kevin got too sick about a mile from the apartment so we just turned around and came home. Kevin lay down for a while and then was able to get up and we headed out to Subway because he was 'in dire need of' a sub. It really amazes me that he doesn't look like a sub by now, lol. He is really quite addicted to Subway.
One good thing is that he allowed me to drive around looking for one. We knew there was one about 5 miles in one direction, but we really hadn't driven much in the other direction. So we did drive around for a little while and we finally found one.
I really do need to just get out there and drive, but unfortunately Kevin can't handle being out and about long. I am told we are finally getting an aide to help me out, but from what I understand it's only for 6 hours a week. That's not going to really give me much time to do anything, but it's going to have to do for now.
And to those that let me know about the caregivers bill passing, thank you! Tom asked how I feel about it and the word that came to immediate mind was 'RELIEF'!! I sure hope the President signs that baby and fast! I just want to get this thumb looked at, although I'm sure it's too late to fix it completely. I also can't complain about having an income either. It will be nice not to have to lay awake worrying about the financial future.
And Anita - yes, we knew that a Toy Story 3 was in the making. Kevin can't wait for it to come to the theater. And we were headed to see How To Train Your Dragon today - glad you liked it. Oh - and we always go to do everything at 'off' times. There would be no way during any of the normal busy times. Not for movies, restaurants, or anything else.
And to Barbara Burke - thanks for letting me know about being able to call 911 when the elevator is down. I hope we don't ever need to do it, but at least I have the knowledge if it ever is necessary.
And now I need to end this thing. There is a howling wind out there and there are tornado warnings so I better post quickly just in case...
We had an exceptionally lazy day today. We did nothing. We went nowhere and had a simple dinner of egg salad sandwiches. It was just gray and overcast out there (couldn't even see one meteor last night, bummer!) and it really affected our moods. It's ok though, we all need a slow day sometimes.
On this note, I am just going to go watch some tv. I know I have been writing less and less, but there really isn't a whole lot to say right now.
Before I go though, Jessica - I am very sorry to hear about your grandad passing away. My thoughts are with you!
We had a pretty good day today. We didn't go anywhere, but we invited Mary, our wonderful FRC, over for dinner and it was a really nice evening. Kevin enjoys seeing her (as do I) and he did well for a while, but he did spend the bulk of the night in his room - like usual. He really just can't handle the talking for very long again. For me though - it was great! It's a very rare thing where I get to have a conversation and food all in one. Our lives really are very quiet.
And I didn't hear anything from the apt complex today. Tomorrow, I hope, although I'm not holding my breath.
So now I am going to sign off and watch the meteor shower. I hope it's visible from our balcony...
The elevator was fixed by the time we got up this morning, but I still called to set up a 'contingency' plan. I really liked the idea that if the thing is broken, we can stay at a local hotel because there is absolutely no way that Kevin is going to HAVE to walk up those four flights of stairs again.
Unfortunately, the manager didn't return my call today. I am giving her a couple of days because who knows...maybe she's off sick or something, but if nothing is done by Thursday or Friday, I will most certainly call that advocacy group.
So we did have a doctor's appointment and we did go and all is well with Kevin. We are going to keep playing with his meds trying to get his pain more managed and also trying to eliminate the amount of pills he still takes every day. We have to do it slow though so time will tell.
And we did visit the ward today too. We miss everyone. It's like living with a bunch of people and then moving away (which I guess really is what we did, lol). It was funny because Kevin went right to his room (he has almost always been in 403) and was shocked that someone else was in there. I think he thought it would be saved for him, hehe.
Up until today I have felt this apartment was just perfect for us. But today? TODAY - the elevator malfunctioned!!! Now let me tell you that our apartment is on the fourth floor and you guessed it - Kevin had to walk up all four flights of stairs! I am spitting nails!
First let me preface this by saying that we had went to the movies today to see Alice in Wonderland and Kevin did pretty well until the end. I think it was just because he was sitting for so long, but regardless - he was hurting pretty bad by the time it was over.
So we headed home, but he was so nauseous that we had to keep stopping and it was all I could do to get him out of the car and into his wheelchair to come up to the apartment. Then we get into the elevator area and Kevin hit the button and nothing. So he hit it again and still nothing. We waited, thinking maybe someone was holding it, but really, it just wasn't moving at all.
Now you had to know that I got on the phone and called maintenance, but I had to leave a message and by then people were walking past us and everyone was telling us that it was broken down. In about five or ten minutes someone from the apartment complex called me back and told me that they were sending someone to help get him upstairs, but no one ever came.
It took Kevin AN HOUR to climb those four flights of stairs. He had to rest 10-20 minutes in between each flight and he was so sick by the time we got to our apartment! I AM LIVID!!!
Worse - I was informed that the elevators have broken down four times in the last six/seven months and the one time it was 13 days before it was fixed! Say WHAT?!!
Don't you think that the office people would have told me that knowing Kevin was in a wheelchair and sick?
I am furious! I can't even begin to tell you how mad I am. Why wouldn't they tell me? And now what am I going to do? Are we supposed to stay here risking Kevin having to do this gosh knows how many times over the next year? I already looked all night at houses for rent and once again - there just isn't much out there that fulfills all of his needs. And frankly, I am just too damn tired to move all this stuff by myself again.
Man, I am really PISSED OFF! Kevin has a doctor's appointment tomorrow and I don't know whether to cancel it now or wait and see what tomorrow brings. Especially because I am wound so tight I probably won't sleep a wink. It's already almost 3am and I am still blowing steam from my ears!
Geez! Why can't something - just one flippin' little thing - go right for once?
Unbelievably, Kevin has been sitting in the living room all night watching tv/movies. We sat and watched Horton Hears A Who, then Rat Race (a fav or ours) and now he is flipping channels. Actually, it appears we have landed on The Mighty Ducks.
So we didn't really do anything today. We never left the house, both of us just vegging around. It was a really nice day so I turned off the air and threw all the windows up. I made some chocolate chip cookies for dessert and Kevin is munching on those right now.
I did want to mention something. A few of you were surprised that Kevin could hook his XBox up so I figured I needed to clarify that Kevin pretty much knows what's going on around him at all times. He knows how to run every electronic device out there, he knows how to get around the stores by himself and also how to pay for things using his debit card. We are making great strides in the talking department and he was able to tell me where he was in Target the other day when I called him (sorta, lol. He told me 'bananas' so I went to the front where the fruit was, but he was actually in the freezer aisle that had a picture of bananas on the endcap. It's a start though, right?). So he showers himself and does everything - the only thing I have to do is help him with his deodorant. He understands what he wants AND what he doesn't. He knows his meds better than anyone - not the names of them - but the pills and the doses. He is reading more and more and he can do addition and subtraction very easily (even large numbers). He knows almost every movie within three seconds of viewing it and often uses them to communicate things that I just can't understand the normal way (charades). All in all, he has really come a LONG way cognitively in the last six months or so.
This is not to say that he is recovered by any means. We have many more years of therapy ahead of us, but he really has made wonderful improvements.
And to wrap things up, Miss Em - you asked about my parents and they are doing well. Dad is getting stronger every day and will be starting another round of chemo shortly. I don't know if I mentioned it, but they moved into our home in FL so that it doesn't stay empty for a year. It's already been empty so much over the last year and I hated to leave it that way. It will also help us cover the expense of running two homes.
And Mel - I will tell Maritza 'hi' next time I see her! Should be this week one day.
And for those grapeseed oil users - can you buy it anywhere or only in specialty shops?
Not much happened today so I am just going to skip writing and scrap for a bit. It's been a while since I have done so and I am itching to get back to it. I sure hope Kevin will 'let' me...
There isn't a whole lot to talk about today. About the only thing we did was go to Target for some groceries and then I just built a tv stand and put together the vacuum cleaner. Pretty exciting, huh? LOL.
I do want to say 'what a relief that we aren't home-bound though, huh?'. Man, was I scared about that possibility.
So I am just going to answer some of the questions that I haven't gotten to in a while.
GrannieEv - thanks for the info on the Lions Clubs. I had never even thought of that. Lucky for us, the VA did bring him a bed and after the docs came the other day they are even sending a better/bigger one.
Karen - I am anxious to try that Kettle Corn recipe. I am trying to decide on using ghee or oil though. Just never heard of ghee before...
Anita - yes, Kevin listened to screamo before he left for the Army. His favorite band even back then was Atreyu - totally can't understand a word they say, lol.
Jenna, thanks for the info about hyperbaric treatments. Unfortunately, Kevin would never lay in one of those chambers for an hour or more. I am anxious to keep researching it though. It's still so new and you never know what they will find and about the only thing I can say is that you never know what Kevin will do years from now. He has really just come so far, but if he thinks something is weird, he's just not going to do it.
If I have missed any questions, please re-post them. I have them all cleared out of my inbox, but sometimes I delete by accident.
So yesterday was a bit rough. Kevin never really does well with change and he fought against everything at the apartment. Nothing was right as far as he was concerned. It really was a horrendous night and I am so glad that it's over.
Today was much better. Once he gave it a chance, he saw that things are not as bad as he thought. Granted, the bed they brought really isn't going to work, but he has no choice but to sleep in it until a replacement can be brought. And he really is seeing that it's nice to be able to sleep without constant interruptions and to just get back to being more independent.
As for the doctor, the therapist and the case managers that came today - I was very impressed. They really looked over the apartment and gave me some insight into things with TBI patients and they also discussed possible therapies and other services available to Kevin. I really liked each and every one of them and felt that we will have a good 'working' relationship.
And Kevin decided tonight that we were going to the mall. I had planned to stay in as it was his first day home and it was rainy and yucky out there. But he was adamant that we go shopping to buy a belt (his old one won't go around his waist anymore). So we loaded up and headed 4 miles down the road to the mall. He did fantastic. He picked out some new clothes, sunglasses, a hat and a wallet at Pac-Sun. It was just so nice to do 'normal' things with him again. And he did so well in the car - even listening to the dreaded screamo music.
I really needed to run to Walmart after the mall for milk and things, but I could tell Kevin was getting too tired so we just went home. Not surprisingly, he went to bed immediately for a little nap.
After that, he just organized his closet. I am not buying dressers, we are totally using our closets for everything and since he has to have everything in it's proper place, he spent some time getting it just right. I noticed he also hooked up his XBox.
It's amazing when you think about it, isn't it? The kid almost completely understands what's going on around him and he can do so many things we never thought he'd be able to do. I told the docs today that I expect Kevin to be somewhere in the 90 percentile recovered when this is all over. It's going to be years down the road, and it's going to be a rough road too, but I do feel he can pretty much be his old self someday. He's already made great strides toward that goal...
And I am going to leave you with two photos from the other day. The first is me and Martiza and the second is Kevin doing rabbit ears to one of the therapists. I don't think she ever knew that he was doing it. It was so funny!
Unbelievable! Kevin did fantastic today on the drive to the apartment!!! I was so scared because when I got to the hospital he was so sick. He was sitting in the dark with his puke bowl on his stomach and I was so sure we weren't going. But we gave him some under-the-tongue nausea medication and within a half hour he was raring to go.
So we loaded him up and away we went. Before we left, we also gave him some anti-vertigo meds and some pain pills and he had no issues whatsoever. I have to admit that I was really surprised.
And another thing that really surprised me is that the TBI doctor and therapists from the VA here in SA are going to make a house call on Thursday. Yep - they are coming to our home to visit with Kevin and get to see what he's like in his own environment. They wanted to originally keep us in the hospital another day and meet us there, but they changed their minds and felt it would be best to see him at home.
I am also happy to say that the bed and rails were brought over and installed today. Kevin was not too happy to see the hospital bed in his room, but he must sleep with his head elevated so it's something he will have to adjust to. I don't think he remembers that it hurt him to lay in the normal bed at the FH.
We didn't get to go to the apartment today because there wasn't an extra therapist to be able to go with us. It was a real bummer because Kevin was in the best mood I have seen him in in weeks. We got up and went to lunch and we sat in the waiting room with Maritza and Joel for almost a half an hour and he was just so much happier today (for the most part) than I have seen him in a long time. Maybe it's the anti-depressants? Who knows...I just hope he's like this tomorrow because we are scheduled to go at 1pm.
And yay - Kevin got his PICC line removed today! It's been giving him a lot of problems and if we would have had a choice we would have removed it days ago, but it's literally impossible to get blood any other way. So we kept it in until all his cultures came back clear. Yep - KEVIN IS INFECTION FREE!!!! (As of today anyway.)
And this is pretty much it for today. I've got to get to bed here pretty quickly because Kevin's hospital bed is being delivered first thing in the morning. Hopefully I can sleep...it really doesn't come easily...
There really isn't anything to write tonight. We didn't do anything today - Kevin didn't even get up to go down to lunch so it was a pretty boring day.
If I'm correct, tomorrow we are planning to take a run to the apartment with Kevin and a therapist. We just need to see if he can handle the ride and what kind of aids we need (railings, etc). Wish us luck because I really don't think he is going to be able to handle it at all. I truly hope I'm wrong...
We did have a nice dinner tonight. Breezy and Chris came over and we got Kevin over to the FH. It was made even better because no one was around at all so it was ultra quiet. It was just a nice couple of hours.
Unfortunately, Kevin got sick afterward and vomited everything all back up. I wish this nausea/vomiting thing would go away. It's so hard to watch him constantly go through it. Even if we could get back to where it was just once every couple of weeks or so, that would be good.
And I'm still really worried about him handling the drive to the apt. We are anticipating a Wed discharge and I'm just not sure. There's no bed yet either, so he may be in the hospital longer.
And now I'm going to leave you with a somewhat blurry photo that was taken today while we were all hanging out in the waiting room. Obviously it's Kev, Joel and Maritza in the middle and the volunteer Alicia, who considers herself Kevin's 'Mexican Grandma' and her granddaughter on the ends. Kevin is only able to visit for about 5 minutes before he gets overstimulated, but he always has so much fun with Maritza and Joel. Alicia is a bonus too. So anyway, here it is:
Kevin is doing a bit better. I think it's in part because we are fixing his anti-depressants. Somehow the dosage got changed and we are working on getting it back up to to what he normally took. I attribute the reduction into causing him to be impossible to be around and into his feeling absolutely horrible. I have been so worried because I could see him sliding backward to where he was last summer/fall.
If you remember then, that was when he was running away and although I never mentioned it on the blog, he became suicidal after a while. I could see him heading back to that time and I have been a nervous wreck.
But he's doing better anyway. We still have to increase one more time and then we will be back to where we were. I am hoping the increase happens tomorrow because I know they take a while to fully work and so far he still has no desire to 'go home' to the apartment. He really wants to just stay in the hospital until the plate is put back in his head.
And today I finally made it to Pac-Sun to get the kid some new clothes. I got like 8 hours of sleep last night and hit the mall before heading back to the hospital. There is a mall just 4 miles or so from the apartment (I slept there on the couch last night - HEAVEN!). So anyway, he now has some jeans that fit better and I am proud to say that I picked more clothes that he liked than he didn't, lol.
Ok, now I need to get some bills paid and then head to bed. I already made stuffed pork chops that I am going to bake tomorrow for dinner at the FH. Hopefully I can get Kevin to come over to eat...
I hate to do this again so soon, but I am going to skip writing again tonight. I am just so tired and I want to finish the laundry and get to bed. I even left Kevin a little early tonight because I am just flat out exhausted.
I finally got some pictures of Kevin to show you guys. He really doesn't like anyone seeing his head anymore, but he actually agreed today. I think it was because we had a distinguished visitor at BAMC today. Here is a photo:
I am sure I am the only person out there in America that had no idea who the Vice President was, but I learned it today. It's actually quite sad that I didn't know, but it just goes to show how sheltered our lives are nowadays (not that I was ever a very political person). So anyway, obviously this is VP Biden and his wife. I don't know the first thing about his politics, but they were both very nice to Kevin and I and it made Kevin smile to get a visit from the VP of the good ol' USA.
And I have to admit to really liking his medical aids too. We had such a nice chat with them. I admit though, that I could never live in such a circus. So many secret service agents and just people everywhere. CRAZY!
So anyway, we also had an ophthalmology appointment today as Kevin has been trying to get me to understand that there is obviously a change in his vision. The language/understanding barrier is doing a number on us for this - I just can't get what he is saying because he doesn't understand what blurry, double vision, or any of the other possibilities mean. They did tell me he has 20/50 eyesight though and I need to find out what it was the last time he saw the eye doctor. I thought (understanding he has no peripheral vision on the right) his eyesight was 20/20. I so hope he isn't losing his sense of sight.
And now I am going to end with a couple more photos and a video of Kevin doing the 'robot' dance, lol.
Kevin did better for the most part today, although we did have a bout where he was in extreme pain. We are really playing with his meds though as he is just on way too many. We are at the point now where we are just battling side effects with more meds and that doesn't really work for me (or him I would bet).
We had gotten away from needing many breakthrough pain pills over the last few days too, but we were back to it today. It got better once we gave him an allergy pill that we removed yesterday - seems like that might be a problem.
And tonight Kevin came over to the FH for a couple of hours. Not until 9pm though and only then because I didn't do laundry last night (went to apt instead) and he needed clean clothes. So we came over for a bit and watched some TV. At least I got him out of the hospital. They are discussing discharging him sometime in the middle of next week. We'll see though - he's gotta be a little more stable than he is right now first.
Before I forget - I updated our address at the side of the page. This will be our address for roughly the next year.
And to end tonight's post - today...I got my braces off! Seventeen (yes - 17!!!) months later than they were supposed to be removed. I just could never get to the orthodontist to get them tightened and stuff so I went to one here and just had him remove them. I admit that they should have gotten tightened a few more times and then removed, but what if Kevin is home-bound? I will not be able to leave the house if that's the case. Nope. I just had them taken off.
Aaahhh...what a wonderful smooth feeling...and now I won't get caught eating popcorn...or chewing gum...or eating pizza crust...or biting into an apple...or even red licorice...
I hope everyone had a great Easter! I did end up cooking a little ham I bought for dinner and Kevin and I ate in solitude. There was no one at the FH today, which was much needed after the night we had last night.
Kevin ended up needing another PICC line inserted - even though he has a blood infection. They tried 15 times to get an IV in and to get blood. Sonar was used, even anesthesiology tried - no one can get anything. It's not due to dehydration (Kevin probably drinks more than any of us out there), it's due to medications and just over-use. His veins have probably been poked a thousand times in the last two years. So out of desperation that is what they had to do - reinsert it.
They called me back to the hospital to do this at 2:30 this morning (I was still at Walmart) and they didn't end up actually doing the procedure until until almost 3:00 this afternoon. I guess no one wanted to come in on a holiday? So I have to ask - why did I have to sit there for 12 hours waiting to sign consent forms? Yep - I have to admit that it made me mad. Honestly, I could have cared less if someone didn't want to come in until the afternoon - just don't make it where I get no sleep while waiting to sign forms because it's just so important that I come 'right now'.
Oh well, what's done is done, but this is the second night this week that I got not one wink of sleep. I am just so tired. Truthfully, I should be at Walmart finishing the shopping that I cut short last night and then unloading at the apartment. I also need to wash all the new dishes, pots & pans, silverware, etc, but frankly - I am just too dang tired to drive anywhere tonight.
Kevin is doing better. We actually went to the FH for over 4 hours today! I cooked dinner and we ate together and he did pretty well. There was another wounded soldier there and Kevin pulled out a few of the coins he got from some of the visiting generals and was showing them off. He probably has about 50 or so at home in FL and he loves to look through them.
Tonight though we are having some issues getting blood. We always do, but they just can't get any at all tonight. Most of the times it takes about 10 pokes, but it's just not happening tonight.
So I am going to quit and head to Walmart for another round of shopping. I did get the keys today and got the car fully unloaded, but it's time to load 'er up again.
Kevin is doing much better - better than he has in weeks, truth be told. He got up and walked around a lot today and he didn't need any pain meds until 5pm - that in itself is miraculous! He doesn't seem to be as dizzy and he was barely nauseous today so that was pretty wonderful too. I am thinking that maybe the acupuncture combined with the two new meds he's on (one for the vertigo and one that has been found to help with PTSD) may just have done the trick. We'll see...I so hope he's just as good (or even better) tomorrow. I would really like to get him over to the FH for a bit.
And tomorrow I have to go early in the morning to get the keys to the apartment. It's times like this that I wish I had help. It's going to be really rough having to carry everything from the car up to the apartment myself. Thank goodness there's an elevator, but it's still going to be a lot of work - many, many trips over the next week. I have to go shopping every night after leaving the hospital too to buy everything we need. Have I ever told you that I absolutely HATE shopping? Kevin loves it, but I despise it. I sure wish he could do that part of it, lol.
Oh well, it's necessary and there's no sense whining about it, I guess. And I have to admit to looking forward to being in one place for a long while - I just wish it could have been where my parents are. They are discussing coming for a visit once dad feels well enough and gets through another round of chemo. It'll be a little while for sure though...
Ok, it turns out that Kevin's Picc Line has become infected. They will be removing it within the next few minutes so hopefully all will be well shortly. I am not sure how it will be treated, but I guess we'll see.
Kevin's fever broke and he is doing much better. They are still trying to figure out what is going on and so far I only know that his CT Scan came back fine, as did his urinalysis. I am still waiting on the doc to come in and go over all the other tests with me.
I wish this was an April Fool's Day joke, but it's not. Kevin became very ill a few hours ago. He is running a temp of roughly 104 and it just keeps going up. They are in the process of gathering ice packs to put on him and hopefully that brings his fever down. He did get Tylenol about 2 hours ago, but that didn't help at all.
I don't know what tonight is going to entail so I wanted to write really quickly just in case. I will update as I can.
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'.
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