Day 684 - Apr 13, 2010

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.

So tomorrow - we get to go home! Yay!!!

Day 683 - Apr 12, 2010

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...

Day 682 - Apr 11, 2010

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...

Day 681 - Apr 10, 2010

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:

Day 680 - Apr 9, 2010

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...

Day 679 - Apr 8, 2010

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.

Will catch y'all tomorrow...

Day 678 - Apr 7, 2010

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.





He's such a weirdo, huh? LOL!

Day 677 - Apr 6, 2010

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...

Day 676 - Apr 5, 2010

I am going to skip writing tonight. Kevin is doing fairly well, I just need to run to the apt and get some stuff done.

Day 675 - Apr 4, 2010

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.

So on this grumpy note - I am going to bed.

Day 674 - Apr 3, 2010

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.

Day 673 - Apr 2, 2010

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...

Update #2

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.

Will update more tonight.

Update

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.

Day 672 - Apr 1, 2010

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.

Day 671 - Mar 31,2010

Kevin was able to get up today and we made it over to the Family Center to rent a movie, but he was hurting too bad to spend any time there so we went back to the hospital without one. We tried though, right?

We also realized today that the anti vertigo medication fell away so he hasn't gotten any since the first day. We put him back on it this afternoon so hopefully we see a change.

We are going to be messing with his meds over the next week; taking some away and adding others, to try to get him to a better place. Wish us mega luck on this, please.

One really awesome thing today was that Kevin had acupuncture done for his nauseousness. Totally cool, as I had only seen it done in the movies, and I have to admit that we had no bouts of nausea at all tonight. The jury is still out on it in my eyes until tomorrow though. We have periods of a few hours where he is fine, but we haven't went a full 24 hours since the plate was removed.

And two good things happened today - first, we can get the key to the apt this Saturday instead of next Thursday. I am glad because this will give me time to get things organized before Kevin comes home.

Second, I opted to rent a washer/dryer instead. Way cheaper as I couldn't find a large capacity set on craigs list (where I had been looking for almost a week). People just aren't getting rid of large capacity sets, that's what everyone is buying right now.

As for the hospital bed, we are thinking it's not going to be a problem. All of the docs are in line with the need for it. Now we just need to figure out which insurance carrier is going to cover the cost.

Oh, and before I forget - can someone tell me what the dark green beret means? Kevin saw a guy wearing one when we left the hospital today and he was in total awe. Not being military myself and him not being able to talk, I couldn't even begin to guess what he was trying to tell me. I assume the guy was something special...

And now I am going to leave you with a very grainy photo of Kevin with Daniel, the other soldier that survived the attack that took Andrew and James from us:

Day 670 - Mar 30, 2010

Kevin spent the bulk of the afternoon alone today. I had to go and buy furniture if it was ever going to be delivered on time. I hate having to do this again, but when weighing the cost of packing up and moving things from FL to TX and then back again, it ends up being substantially cheaper to just buy new and just sell it when we leave.

One thing I will say is that the apartment will be on the sparse side. I am only purchasing the necessities and that's it. No curtains, no decorations, nothing. I got a couch, chair, ottoman, tv stand, tv, table and 4 chairs. I have a bed at Breezy's I can get and I will have to buy another if Kevin can't get a hospital bed. That's it for furniture and then I need to get all the normal stuff yet from Walmart - towels, plates, silverware, etc. I can't get any of that though until the day I get the keys (April 8). My car is already loaded to the gills with some of the stuff I had my sis bring when she brought the car.

So Kevin was pretty sick most of the day today and although the anti-vert worked well yesterday, he really didn't get up much again today. It's just such a bummer. He has also been in extreme pain today too. I am noticing he needs more and more to get through the day. This worries me some. I haven't seen anyone from pain management since the time Kevin was in ICU, but I am thinking it may be necessary soon. I guess I will check into it tomorrow.

And now I am going to get packed up to go home from the hospital. I gotta get up early and try to find a washer/dryer. I looked at a few used ones today and now I am going to head to the Sears Outlet. I could care less about dings/scratches/refurbished, I just need high capacity because Kevin vomits all over his bedding so frequently.

Send those 'good appliance deal' vibes my way please...

Day 669 - Mar 29, 2010

The PA gave Kevin some anti-vertigo medication today and I am so happy to say that Kevin was able to be at the FH for almost 2 hours! We only had to come back to the hospital because he really can't lay down on a flat bed and he needed to rest for a while. He had sat up nearly all that time watching one of the "Die Hard" movies, but it took 2 minutes of him laying down to create a problem. I tried so many pillow variations too, but nothing worked.

So I am battling getting sick. I feel so drained, so sick to my stomach, so woozy. I am going to end now and go to bed. At 12:04 no less!

Day 668 - Mar 28, 2010

I never cooked dinner and I just can't get Kevin to even try to go over to the FH. Frankly, he decided a few days ago that he is just going to stay in the hospital until the plate is put back in. He seems to understand when I say he can't be in-patient for 5 months, but he just doesn't care. This is going to be a really rough transition. I don't know if they can keep him there until the apartment is ready or not, I guess we'll see. I am really worried about all of this - more worried than I was when first taking him home.

At this point, I am just hoping that we can get him to the apartment and we'll take it from there. If he ends up being home-bound, surely I can get some help so that I can at least run for groceries. I feel confident that we can, I just really hate that we slid so far backward. He was doing so well, damnit!

In the meantime, I asked our case workers if there was a chance that Kevin could get a hospital bed for the apt. He has such extreme fluid issues that I worry about him laying flat. Now that I think about it, I believe the neurosurgeon mentioned keeping his head elevated some, so maybe they will get us one. I think I can pretty much guarantee that the VA isn't going to allow me to spend Kevin's money to buy him a bed that can elevate like that, so this is our only hope.

And I think I am going to go and just sit here for a few minutes. I am sitting outside in a rocker and if I close my eyes, I can forget the fence around the post and I won't see the checkpoint only 60 feet from my chair. I can just pretend I am sitting with Moe on the stoop at the video store, drinking a Pepsi and gabbing about how crappy (or good) our days were. Little did I know that those days can't compare to how crappy life is now...man, I would do anything to go back to those days...

Day 667 - Mar 27, 2010

I am not going to write too much tonight. I didn't finish packing and loading the car until 5am and then I couldn't get to sleep. I had to get up early today to bring everything over to the new FH and get it all unloaded too. Truthfully, I should finish unpacking everything, but I am just too tired.

Breezy is coming tomorrow to sit with Kevin and I am going to clean the previous room then. I also plan to cook a nice dinner - I so hope Kevin can come and eat with us.

As for Kevin, he was given an anti-nausea medication this morning and it knocked him on his butt. He slept most of the day and he was just drifting off again when I left at midnight. I only got him up long enough to shower this morning and he did take a ride over to the new FH tonight. We were only here 5 minutes though as he was in extreme pain. I honestly think it's a fluid issue and I asked the PA if it could be likened to motion sickness. We are going to discuss using a medication that is used for that and see if it works (that's if the docs ok it). Wouldn't it be wonderful if that fixed everything? Because to be blunt - I am worried sick that he can't even handle a 1/2 mile car ride and our home is like 15 miles away. If it ends up that he can't handle the ride, we will be totally 100% home-bound. He won't be able to go to the grocery store or anywhere.

Oh please...please don't let it be like that...

PS - thanks anonymous for letting me know that stressor was a word. It underlines it in the post telling me it's not and it didn't show up when I checked at an online dictionary. Strange, huh? I was so sure it was so thanks for assuring me that I wasn't cracking up (anymore than usual anyway, lol)

Day 666 - Mar 26, 2010

I am so happy with our new case manager. She was able to get us moved from the one Fisher House we were in to an older one that only has 8 families in it. I went and checked it out today and it was just so quiet over there. I think there are only 4 families there right now anyway and only 1 of them has children. I am led to believe the kids are older so it should be a better experience.

So at midnight I will be heading over to pack our things and get it all moved. Tomorrow night I will have to clean the room that we are currently in spotless so I may not write too much tomorrow night (or tonight really).

I am hearing that Kevin will probably be discharged early next week. I sure hope this FH works because we can't move into our apartment until April 8.

Yep - you heard me! I found an apartment! It's beautiful, in a secluded area, has an elevator, has hardwood floors for his wheelchair, has a walk in shower in the master, we are on the top floor so no noise from above and they have something in the walls guaranteeing you won't hear your neighbors on either side. It's expensive, but they all are that can fit all of Kevin's needs. I am just thankful to have found one and now I can put this stressor (I am making up words apparently this week, lol) to bed.

Gotta run - it's midnight exactly!

Day 665 - Mar 25, 2010

I had a chat today with the PA, one of the doctors here and the new case manager and we all agreed that Kevin needs to begin TBI therapy here at the hospital when he is discharged. YAY! Cognitive therapy here we come! I am really looking forward to seeing what accomplishments come forth from Kevin having regular TBI therapies.

We also discussed that Kevin should be able to go home pretty soon, but I don't have anywhere to take him yet so he will have to stay put for a bit. His kidneys have improved about 5% bringing him up to an 80% function level. They have removed him from IV fluids and the nephrologist believes that Kevin's kidneys will get back up to 100% soon and I so hope he's right.

Kevin did feel better overall today too. He did vomit some this morning and he was nauseous a good bit of the day, but his mood was much improved. He's still not the Kevin he was before the plate was removed, but I guess I shouldn't expect him to be.

And now I am so going to bed. I only got an hour and a half of sleep last night and I am so tired that my eyes are droopy.

Day 664 - Mar 24, 2010

Kevin had a better day today - most of the day anyway. We did go down to the cafeteria for lunch and he also went and did PT today.

We were given permission for him to go to the Fisher House for a few hours a day and that is when the day turned around for us. Breezy picked up dinner and I sent Kevin in to sit in the dining room while I went and parked the car. By the time I got into the house (it is very far away to the parking lot) Kevin was just overstimulated beyond belief. There is a small child in the house that isn't very well disciplined and he just screams all the time at the top of his lungs. Well, he was left to run screaming up and down the hallways and through the kitchen and it was just killing Kevin.

Now let me be the first to say that it's not that I expect everyone to be quiet just because we are around. Nobody should have to be silent and tiptoe around the house...BUT...when 21 families live together under one roof - everyone should at least be respectful to the rest of the families. You should at least consider the fact that most everyone here is wounded or ill in some way or another and people may be resting at any given time of the day or night.

But, it just doesn't matter because I will not be bringing Kevin back here. We had to pack all of our food back up and rush him back to the hospital to his room so he could shut the door and turn off all the lights for a while. I think it was a good hour before he de-stimulated (probably not a word).

It was just so sad. He was sobbing and crying while Breezy ran to get the car. His good leg was just bouncing off the floor and he started screaming and screaming in agony. It was just so heart-breaking.

He did get back to being better after a while though, but he never did eat his dinner. He really hasn't been eating much lately at all. (Yet he still gained another 5 pounds - he weighs 190 with his clothes on!!!)

And I was told today that we will not be able to go back to FL for a good year or so. I am hoping we can go in June for my niece's wedding, but we'll see. The docs are just worried that we don't have any doctors in FL and Kevin never shows advance signs of infection - never a fever, white blood count is always good - no signs at all.

So I don't have a choice but to find somewhere to live and fast. I am looking at two homes tomorrow (if Kevin feels well enough for me to go), but I am actually leaning toward an apartment that is in a definite good area of town. I am being open minded to the houses, but I was told tonight by a nurse that the area of the one is questionable. I'm still going to look though...you never know...

Day 663 - Mar 23, 2010

Not really anything much to say today. They did start Kevin on some sort of iron program where he will get IV iron supplements for 5 days and that may clear up the anemia. That would be nice as it's been an ongoing problem for about a year and a half now.

So Kevin didn't get out of bed at all again today. He just is not feeling well at all.

One good thing - we got a new case manager today. Yay! She worked all afternoon on finding an apartment for us but she is struggling too. We are at the point that we are trying to find out if we can go back to FL in between all of our appointments, procedures and surgeries. It's going to mean a substantial amount of money in air travel, but it may be our only option.

I have to admit to not feeling overly comfortable being in FL without a neurosurgoen, but I can't torture Kevin in such a noisy environment. I am probably going to just have to get over it and take him home.

It won't be anytime quick though - he really isn't doing too well...

Day 662 - Mar 22, 2010

Kevin was pretty sick all day today. He never got out of bed until dinner time (7pm) and even then he went in his wheelchair to eat. He did feel well enough when he got his antibiotic at 11pm to walk down to the grab-n-go and get an ice cream, however, he didn't eat it. We just brought it back upstairs and put it into the freezer. (he has to stay in an upright position for 30 minutes after taking this medication so it's becoming a ritual to walk down every night).

I did talk to the nephrologist (sp) today and he told me that Kevin's kidneys are functioning at about 75%. They are staying right in and around that range, so they are trying to figure out what to do. They are discussing steroids, but they know that reduces the immune system and Kevin's not really in a position to handle that well. I guess we are going to discuss it again on Wednesday.

So that's about it for today. Hopefully I have something good to post tomorrow.

Day 661 - Mar 21, 2010

I am going to skip writing tonight. I am just too tired. Kevin has been pretty unbearable to deal with lately and it's quite exhausting.

Day 660 - Mar 20, 2010

Kevin's kidneys are on the downhill slant for sure. We are so going backward. He really didn't feel well today either. Breezy came and stayed with him while I went and looked at another apartment and I am not sure, but I don't think he even got out of bed. The nauseousness did go away though, so the Nexium did do the trick for that problem anyway.

It is the weekend though, so we will have to see what everyone says on Monday.

The apartment I found today will work, kinda. It is still 20 minutes away (I think anyway - gotta re-drive out there when I leave here at midnight to make sure), but the traffic isn't AS bad in that direction. It is VERY expensive - what our mortgage is in FL - but at least it fits the bill in size (almost 1400 Sq Ft) and shower needs. I made sure there are no children above us, but the tenants above do have a small dog. I have asked for a clause in the lease that if the dog makes too much noise, we can break the lease without penalty. The complex is going to get with their corporate office on Monday and see. I also need VA approval on renting here, so we will see if it works out or not.

Long-time RN - you had asked if the hospital here has a list of apartments for these types of situations and I have two things to say about this:

1) We would normally get something like this from our burn case manager. We have only seen her 1 time in the 5 or 6 weeks we have been here. I believe we are supposed to be checked on nearly every day, but that doesn't happen. If you remember - the last time we were here - she didn't help us find a place then either. I just feel bad for those that have no one here to help them. What do these guys/girls do?

2) Because many of the other wounded also have her as a case manager, we have learned to help each other out. Many have given me names of some apt buildings that can accommodate Kevin, but they are all filled up. Too many wounded military personnel.

So we are basically on our own. It's ok though, I'll find something...or die trying, lol.

Day 659 - Mar 19, 2010

Kevin was pretty sick today. I am hoping it's just the Nexium loss, but we'll see. They did put him back on it tonight so tomorrow we will know for sure. He couldn't even get out of bed today at all though. He was just nauseous and drained and flat out sickly - poor kid.

Unfortunately his kidneys went backward a bit today. I'm not sure why and I didn't see the nephrologist (sp) today so I'm not sure what's going on. Maybe it was just a fluky thing so we'll see that tomorrow too.

They did start him on the other powerful oral antibiotic so I suppose it could be that.

He hasn't been eating much at all either. That right there tells you there is something wrong - that kid eats like a horse.

I asked the PA today if he thought the docs would allow me to take Kevin to look at an apartment next week (if I find one). He thought it wouldn't be a problem if a physical therapist could go with us (Oh Pam? Our favoritest therapist...?). This way I will see if Kevin is going to be able to handle the ride to the one I choose. If he can't, well we'll cross that bridge when we get to it.

And speaking of Pam, yesterday Kevin went on a 'date' with her, lol. She came in to do therapy at dinner time so the three of us went down to the cafeteria together. She made a joke about it being a date and Kevin pretended they were holding hands and acting all lovey dovey. It was so funny. She sure holds a special place in his heart - you should hear him clearly say "I love you, Pam".

And that's about it for tonight. I want to go watch some TV on the internet so I'll catch y'all tomorrow.

Day 658 - Mar 18, 2010

Kevin's kidneys are looking much better since they took him off the anti-inflammatory, but he is back to being in pain often times throughout the day. We will have to figure out an alternate plan for that. They also removed his Nexium and I can say - that one will have to be put back into his diet. He has been nauseous all evening and I would bet he will be vomiting by this time tomorrow.

Kev also had a CT scan yesterday and it appears that the infection is gone, at least enough to remove him from the IV antibiotic and start him on an oral one. Yay! That Vancomycin was rough!

I did take a jaunt out to that apartment complex today and 1) it's just too far away and 2) it's just way too expensive. I know I may not have a choice but to spend a small fortune on an apartment, but it's just got to be closer. If you remember, the last time we went to Breezy's, Kevin couldn't even get out of the car. That was only a 20 minute drive and this apartment was 40 minutes without traffic.

I have to admit that I am starting to really worry about where we are going to go. I have called about 150 or so apartment complexes so far and probably looked at about a thousand floor plans online - no exaggeration.

Oh well, I have a week or so to find something and get it figured out. In passing, I heard someone say that Kevin will be in the hospital at least that long.

Day 657 - Mar 17, 2010

Kevin was pretty grumpy today. I think he's just tired of being in the hospital, tired of being sick. His kidneys still aren't getting better like the docs had hoped they would. The doctor did remove another of his meds today - an anti-inflammatory - that they think may also be causing the problem. I guess we'll see tomorrow.

We had to change the picc line today too. The old one was giving him problems so they put one in his other arm. Not sure, but that might not be working. He seemed to be in pain in that arm a lot today, but I want to wait and see how it is tomorrow before saying anything.

I know I have not been writing much lately, but I am just so very tired. I am trying to find us a place to live and it's just not easy so it's taking up A LOT of time (and this is just me scouring the internet for one that will handle his needs). I did leave Kevin this afternoon for a bit and ran and looked at one apartment. It's so darn tiny and so darn expensive. It was really too small for him because he would be able to hear me clearly from his bedroom no matter what I was doing.

I did get a referral from one of the nurses today though and looking at the website it looks perfect. HOWEVER, there are no prices listed and that scares me. I will call tomorrow and maybe even run out there if they are open in the evening once Breezy can get here to sit with Kevin.

So keep your fingers crossed that this one works. It's looking like we will be here at least another 6-8 months consecutively. I do hope we can go home for a week or two and visit with my parents, but I'm not sure yet. I also hope we can find a decent place here and maybe (if my dad feels well) they can come for a visit too. We'll see...

Day 656 - Mar 16, 2010

I am just too tired to write tonight so I will catch you tomorrow.

Day 655 - Mar 15, 2010

Still no word on what the plans are for the vanc. Our neurosurgeon is on vacation and the on call docs are wanting to discuss what to do with him before making any changes.

We did meet with our plastic surgeon and we did come up with a plan of action though. In about 3 months, we are going to insert the skin expanders and they will stay in for about 2 months. At that time, they are also going to fix the scar edges from the neck/chin graft, fix the one eye and Kevin also has a 'growth' of some sort on his one ear that we are going to have removed.

Once the skin has been stretched for two months or so, we will then put the plate back in. This is all assuming that there are no infections between now and then (and assuming we got rid of the one we are currently treating).

And today we went on two walks around the hospital. Both lasted over a half hour and Kevin did exceptionally well. I don't know when they are planning to release him yet, but he is at least working up to being able to move around once we do get discharged. Last week he could barely get out of bed so I am happy to see him up and around.

Maybe he can even make it over to Breezy's again (without pain)...

Day 654 - Mar 14, 2010

Kevin's kidneys haven't gotten any better since yesterday so they are discussing eliminating the vanc from his 'diet'. I didn't see any doctors today, this is just what the charge nurse told me, so I am anxious to see what they say tomorrow.

Other than that, nothing exciting to tell you today, so I am going to just sign off early.

Day 653 - Mar 13, 2010

Kevin's kidneys are doing much better today. They are flushing his system with fluids and it has made quite a difference. They did start him back on the vanc, at a much lower rate and it will only run 2 hours instead of 24. I believe they plan to slowly increase it to where it needs to be to combat the MRSA.

He was feeling so much better this afternoon. We went down for lunch (and he even walked and it's pretty far to the cafeteria) and he did really well. He only had one pain pill both yesterday and today too - both times when he was up out of bed. It really just looks like he is going to be doing a lot of laying around until the plate is put back in his head. I can only assume it's a fluid issue, but who really knows.

And due to the laying around - Kevin has gained 14 pounds in the past month! He needs new pants again, but I haven't been able to get to the store to buy them yet. Maybe I can go one day this week.

I am going to answer a few questions tonight too. I have been slow to do this lately and I apologize.

First Janna - you sure may visit once you get moved to New Mexico. How exciting that move will be for you!

To the anon person whose sister was on Methadone - I am so sorry that she was hurt so badly. Thanks so much for the info, I always like hearing bits of information as you never know when you will need it.

Armymom - I asked Kev if he remembered Josh, but I didn't have any pics with me to show him who that was. I backed all of my photos onto an external drive and they are all in FL. Kevin did say 'hi' back though, lol. Is Josh still in Germany? Or was he deployed again?

Debbie C Beham - Breezy is out of town with her boyfriend this weekend, but I will have her check her mail on Monday. I am anxious to see what book you have sent.

Ok, going to watch a movie with Kevin (The Replacements - love it!) and then head back to the Fisher House. I am still leaving him at night here by himself, but he called me all night last night. I didn't sleep a wink, but obviously neither did he, lol.

Day 652 - Mar 12, 2010

Kevin was readmitted to the hospital today. It turns out that his kidneys are not working correctly and we need to keep a close watch on him and also try to figure out what is going on.

I wish I could tell you what this really means, but at this point, I just can't. Infectious Disease is hoping it's just due to the amount of vancomyacin(sp) in his system, but we don't know for sure (especially as he's been off of it for 2 days now). Today we are running fluids through him to see if it makes a difference - I sure hope it does.

So that's really about it. I felt bad because the hospital had been calling all morning to tell me to bring him in, but I had to have my phone on silent overnight because of Kevin's over-stimulation. I never even thought about it until almost lunchtime and I looked at the phone. Duh!

But I guess it didn't make much of a difference anyway. He's here and all hooked up to the IV now so all is good. As good as can be, anyway...

Day 651 - Mar 11, 2010

Today was another rough day. It started out ok, but we decided to go to Breezy's and have a nice dinner there. We started out and found that due to all of the construction, the roads are very bumpy. Kevin was in so much pain due to all of the bumps - just like the last time he had no plate in his head.

So it was so bad that he wouldn't even get out of the car once we got to her house. He didn't think he would be able to get up the few steps it took to reach her door. I really was at a loss as to what to do. I knew if he just lay down for a bit the pain would go away (with the help of some pain pills), but I really couldn't see how to get him up the steps. I also knew that it was rush hour and it would take over an hour to get back to the Fisher House - re-hitting all of the bumps.

We decided to just sit in front of her apartment in the car for about 45 minutes and we hoped that the pain would go away. It didn't, but it was close to 6pm by then so we left, hoping that the traffic might have died down. It was actually pretty good and we made it home in a decent amount of time.

But then we came into the house and there was a birthday party for one of the little girls that is here. First I felt bad for Kevin because I knew he couldn't handle the noise, but then I felt bad for the little girl because she had no other kids at her party.

But, Kevin's my priority so I just got him into the room and into bed. I tried to be so quiet stumbling around in the dark, but he was so overstimulated at that point that I knew it was best for me to leave the room. So I did.

I went out to the living room and had a little pity party. It really just does suck that we can't catch a break. I would say both Kevin and I have accepted what has happened to him/us, but all the other crap just needs to go away. We just want to get on with our lives and not have all these medical emergencies and not have to deal with all the red tape.

But, it is what it is, I guess. So suck it up, Les, and continue on. Right?

Day 650 - Mar 10, 2010

Today has been a pretty crappy day. Kevin is feeling somewhat better, I think because they realized he had too much of the antibiotic in his system and we stopped giving it to him. I have to take him over for a blood draw tomorrow afternoon. Once we find out his levels, we will begin again.

But I had a VERY trying day. I don't want to talk about it really, but I will say that it is very tiring and very frustrating having to fight everyone to get Kevin taken care of the way he deserves to be.

Anyway, I am not really in a very good mood so I am going to just go to bed early.

Before I go though - Janet - we did go look at the Operation Homefront Apts today and we almost ended up next door to Matt! We had to decline though because it only has a bathtub (instead of a walk-in shower) and Kevin really struggles to get into one. It was also on the second floor and I worried about "having to" do the steps. Bummer, as I was hoping to adopt Matt into the fold and make sure he was well fed, lol.

Did you all know that it's nearly impossible to find an apartment with a walk-in shower?

Day 649 - Mar 9, 2010

We didn't do much today. We had to go to the hospital and have some blood drawn and that's about it. Mostly we just stayed in our room and Kevin slept while I watched tv on the computer. Luckily this time our beds are set in a "T" placement so if I am on the computer it doesn't shine any light his way.

So I am just going to sign off and go scrap for a bit. I am getting smarter by bringing some supplies when we travel now, lol.

Day 648 - Mar 8, 2010

Kevin did a little bit better this evening. He tried to get up this afternoon, but he was really dizzy. I did talk him into trying again though by bribing him with the restaurant of his choice for dinner and it worked. He did get up (slowly) and he and I went to eat (we are back to going at 'off' times so the restaurants are not busy). He handled it well, but he was soaked with sweat by the time we got home and he was in some pain. I'm just not sure this new pain regimen is working. And I just wish I knew what the pain was stemming from too. Is it a fluid issue? Or sinus pressure? Or just general surgical pain? I just don't know.

And to change the subject - we did end up giving Princess away. My niece took her as a trial run and I haven't heard yet how it's going. Kevin was quite sad, but the cat had been home alone for weeks now and it was ripping the house apart. It really just wasn't fair to the cat and we know we won't be home for quite some time so it was the right thing to do.

And that's about it for today. I hope he feels even better tomorrow...

Day 647 - Mar 7, 2010

Kevin barely got out of bed today. Breezy and Chris came for dinner tonight and he wouldn't even leave the room - we ate without him.

I see him sliding backward a little bit. We were making great strides toward him handling noise and light better and we are now going the other way.

I did get him up for lunch though and while we were in the dining room he was so angry because people were talking on the phone and kids were screaming and it was just generally busy. He was screaming at everyone and you could see him 'flooding' - something I haven't really seen much of in a long time.

He also can't handle getting up out of bed hardly at all. I am hoping this is all just a fluke and that he feels better in a day or so, but we'll see.

I will say this - if this continues, this part of the journey is just going to be so rough. I just wish Kevin could handle all this stuff; noise and people. I hate that things are so hard for him.

Day 646 - Mar 6, 2010

I am going to skip writing tonight. I don't really have anything to report as we didn't do anything anyway.

Day 645 - Mar 5, 2010

Kevin was finally discharged today! The Picc Line instructions seem simple enough so I should be able to handle it all. We'll see tomorrow if my thumb can handle it too. So he has this little softball sized and shaped piece of plastic that has his meds inside and it is released by gravity into his arm. He carries the ball in a fanny pack (He was soooo not crazy about having to wear that, lol. Totally uncool!) and it gets changed every 24 hours or so. This means we can travel about the area and do whatever we want.

We didn't do much of anything today though. Kevin still hurts when he is up and about for too long so we are limiting what we do. We did go visit Joel for a bit and a General Thurgood came to visit the ward today. Here are some photos of the General with both Kevin and Joel. I was so excited because it's the first time I had seen Joel up out of his chair. He was fitted with a prosthetic leg and he can walk and everything now. So proud.


This next photo is Joel, Maritza, Jose, Kevin and myself.



I would say it is just like old times, but back then none of us knew if our boys would ever wake up from their comas. Or live through the night. How far we have all come, huh? Not that we are medically stable by any means, but hopefully we are getting there and we are most definitely out of the acute stage.

And that's about it. Kevin is watching "The Jetsons" right now. He so loves his cartoons, lol.

Day 644 - Mar 4, 2010

We are still in the hospital. I guess things weren't lined up for us to go home so we had to stay another night. I have an appt at 9am tomorrow though to learn how to handle the Picc Line and meds. From there we will head over to the Fisher House and continue on.

I have been working on lining up a place for us to live. Now that Kevin is discharged from the Army, our only option is the FH and that really just doesn't work for someone that has Kevin's disabilities. It's a wonderful place though and soooo appreciated, but, since we will be here for quite a long time, another plan is in order.

And guess who else showed up at BAMC last night? Remember Joel and his parents Maritza and Jose? Yep! Joel flew in from FL yesterday and is here to have some graft work done. Kevin and I went and visited in Joel's room both last night and today and it's just so nice to all be together again. We haven't seen them much at all since we left the VA hospital in FL last May.

Anyway, that's about it for today. I think I am going to go and finish my newest David Baldacci book. Goodness that man can write!

Oh and to those that asked - yes, please send all mail to Breezy. I don't know how long we will be here and I know Breezy will be there for a long while yet, lol.

Day 643 - Mar 3, 2010

Kevin got moved back up to the fourth floor today. Yay! It looks like we will be discharging tomorrow too.

Now I move on to more concerns, a couple of them being staying at the Fisher House because we know Kevin needs his room super cold and can't handle a lot of noise (did I mention there is a newborn baby next door? Acckk!!) and also the fact that he will be on 24 hour IV antibiotic drip. I am concerned about this because it appears you need two thumbs to hook/unhook the thing and I did something to my left thumb back in December. I believe it's broken, but with no insurance I can't say for sure. There is definitely bone sticking where it shouldn't be and my one joint keeps coming out of place. Who knows, but I definitely can't do much with it.

And now I am going to leave you guys with a video of Kevin opening Jesse's gift. It was taken with my phone so it's not real big.

Day 642 - Mar 2, 2010

Kevin has been much better today, but he is still in ICU. We need him to be 'normal' for 24 hours before we will move him back up to a step down ward.

I can't begin to tell you how scared I was yesterday. We had replaced Kevin's Oxycontin with Methadone over the past week and it appears that he did get too high of a dose(or too many doses and maybe it all caught up to him). He was totally out of it. I don't think he knew who Breezy or I were at one point and he was angry and screaming at the top of his lungs. He was vomiting, we couldn't wake him most of the day, his body was having tremors and his vision was completely out of whack. I honestly thought he was dying.

My first instinct was that he was over-medicated, I even alluded to it on the blog here (I think?) previously, but the nurses all were concerned with ICP. Oddly enough, I hadn't even thought about that. Probably because he had moments of lucidity and you typically don't with ICP.

So anyway, they didn't give him his Methadone last night and when they went to this morning I asked them to wait until Pain Mgmt came in. They did end up cutting his dose by 25% so we will see what happens. I understand that we can't just pull him off completely; first because he would go through withdrawal and second because he would be in too much pain, but I just didn't think he should be given the same amount?!

I guess we'll see how tomorrow goes. I will let you all know as soon as I can.

Update

kev is still in ICU, but he is doing much better. I will update as I can via my phone, but it will be intermittent.

Day 641 - Mar 1, 2010

I am writing very early tonight because we will be heading down to ICU for a bit. Although we are unsure at this time, we are thinking that Kevin is 'overdosed' on pain meds. He is barely responsive and he is vomiting all over the place. His CT scan looks great, so we don't feel it is a neuro situation.

I probably won't be able to update until tomorrow, but I didn't want anyone to be upset in the interim.

Day 640 - Feb 28, 2010

Kevin pretty much slept all day today. He did wake up long enough for a few visitors - a group from Operation Military Embrace came to visit all of the wounded warriors and my cousin Elizabeth and her husband Jake came down from Ft. Hood today too.

Kevin really wasn't in a great mood though. I don't know if he just didn't feel well or if he was just tired. We'll see what he's like tomorrow.

My sister also flew home tonight. It was nice having her here and it gave me a chance to run some errands while she stayed with Kevin for a bit yesterday. It was definitely a whirlwind trip though. And it sure was nice of her to bring us my car. Thanks, Kim!

So a couple of you were wondering why we would need to be in TX the better part of 2010. Let's see...we need to be on IV antibiotics for 6-12 weeks. While we are on them we need to have labs done during that period to test for the MRSA, meaning we need to be here at our neurosurgeon's office. We also have to meet with our plastic surgeon because Kevin doesn't have enough skin on his head to have the plate put back in. There just isn't enough to cover it and what is there isn't all that healthy due to the burns. I have been told prematurely that there are two options for this. The first is basically a graft, but this means Kevin won't be able to grow any hair. I can't even begin to tell you how devastated this will make Kevin. Truthfully, I fear he will give up totally if this ends up being our only option. The second possibility is to have a 'balloon' type implant placed under his scalp and (don't ask me how) it gets 'blown up', stretching the skin little by little. I don't know how long for sure that this takes, but it's at least a month and the surgeon that mentioned it told us he wouldn't do it for at least 6 months after this last surgery to remove the plate.

There may be some time in between the third and the six month for us to go back to FL, but honestly - I just don't feel comfortable being there for any real length of time without him having a plate in. If something should happen, I don't know where I would take him, kwim? It's just such a scary thing to not have a neurosurgeon on hand. I had been so petrified for the month or so leading up to us coming here and I don't think I can do that again.

We also need to have some other surgeries to fix some things and we are hoping to have Botox in his hand this week. This will require some therapy after the fact and it's an awful lot of paperwork to go back and forth to different places for therapy - not to mention the expense of traveling from FL to TX all the time.

And we can't forget that we want to detox Kevin at some point and I also still want to send him to that TBI facility. That's here in Texas too.

Wow. I am only touching the tip of the iceberg here. I can't see all this happening over the next year, so some of it may end up being through 2011. Especially because I can pretty much guarantee that some unforeseen emergencies will pop up. Yep, I can pretty much guarantee it...

Day 639 - Feb 27, 2010

Today was a little bit better, but not much. I think Kevin and I are both in a funk because it really just feels like there is no end. I am trying really hard to pull us out of it, but it's not easy to keep a smile plastered on my face right now.

So my sister (Kim) arrived last night. Wonderful sister that she is, she drove my car to Texas from Florida so we wouldn't have to keep renting one. It's just so expensive and I can't see the sense when we have my car that we can leave here. Truthfully, it looks like we will be here for the better part of the next year so a car is a must.

And that's really about it. I am going to quit early because I couldn't sleep at all last night so I am really tired.

Day 638 - Feb 26, 2010

Unfortunately, Kevin tested positive for MRSA again. I am guessing that it took this long for it to show up from the pus they took from Kevin's head because it was from the 2/16 culture that was done. I guess I should be glad that we at least know what the bug is now, but I really just want all of this to go away.

Today was really kinda a yucky day. Kevin just hasn't been feeling well today and there was hardly any joking or even wakefulness. He just slept most of the day and it worries me some. Tonight's nurse and I discussed all of the meds he is on and we are both concerned that he is on too many now. He is taking over 50 pills a day and it's just way too much. He is just so upset when he gets a cup full of pills to take so many times throughout the day.

So I want to sit down with someone either this weekend or Monday and go over each and every one of them. Hopefully we can eliminate some of them.

We did have a horrible episode today too. Kevin coughed when he took a drink and it went down the wrong tube. Honestly - I have NEVER seen that look on his face. It was utter terror; like he thought he was going to die. He just started grabbing his head and screaming and he had tears running down his face. I was utterly petrified. The nurse came running with an IV pain push and I was never so glad to see her!

Sometimes...man, sometimes this is pure hell! Mostly we can handle this, but I just hate seeing him hurt all the time.

Day 637 - Feb 25, 2010

First, I want to thank Jesse for sending a copy of Toy Story - thanks so much - I can't wait to surprise Kevin with it!

I also want to thank Lori for sending me the link for the movie site! I am anxious to check it out.

So today Kevin still needed push pain meds twice. I know they wanted to send him home today, but I told them not yet. Luckily the PA and pain management agreed.

We also discussed Botox for his hand and we are hoping to get that done next week sometime.

Truthfully, I am kinda tired tonight so I am just going to sign off early. I just want to go to bed...

Day 636 - Feb 24, 2010

Kevin got his Picc line today. You had to know that we had just gotten our lunch in the cafeteria and the admin from the burn unit came down to get us because they wanted Kevin 'right now' in Special Procedures. The poor kid wolfed down his sausage, but phew - was he mad. Nobody gets in between Kevin and his food, lol.

He did do a 'little' bit better with the pain today. I think we only gave him two IV pushes of pain meds and that's great. Matter of fact, before I got there this morning they wanted to give him one and he told them no and that he wanted the pills. Thank goodness! I told him he had to be down to zero for a few days before I would take him home. I don't want a repeat of September when I had to have him readmitted because I couldn't get a grip on his pain.

And unfortunately ENT didn't come today. I am hoping tomorrow...

And today Kevin counted to 11 without any prompting whatsoever. He has been stuck on the number 8 all this time and it finally came out today automatically. I hope it does tomorrow too and then I am hoping he will agree to a video for the blog. Wish us luck on this! He's doing well going down to the cafeteria, but then again it's a hospital. Who knows...maybe he won't care what he looks like after a while. I know we don't. It's kinda funny, isn't it? Breezy and I were just discussing how we can look at Kevin with half a head and not even notice it. It's amazing the things you get used to, it really is.

PS - does anyone have a copy of Toy Story on DVD they are willing to part with? Kevin is dying for it and I can't find it anywhere. I will gladly pay for it, please just email me. TIA!

Day 635 - Feb 23, 2010

The neurosurgeon told us we can probably go home by the end of the week (home being the Fisher House), but we are still working on pain management. After discussing things with the pain docs, we did increase his meds tonight. I sure hope this helps. I really hate seeing him in pain like he is.

We did manage to get him up and showered earlier today than normal and he and I went down to the cafeteria for lunch. It was nice to get him out of his room for a while and he really enjoyed it. He did have some pain after a while though, so we did kinda rush back to the room. All total, I think we were out and about for a good hour and a half.

He also went for about 3 or 4 walks today. We even walked Breezy down to the front door this evening when she left to go home. It's quite a distance for him and unfortunately, it still is always causing him pain. Maybe tomorrow things will be better with the increased meds.

I also asked for an ENT (ear, nose, throat) consult. He has been grabbing the bridge of his nose in pain for months and I wonder if the meds for the sinus infection didn't work (or even if it is a sinus infection). Hopefully they come tomorrow too.

And he is definitely getting the Picc line tomorrow. I am told he will be on the IV antibiotics for a minimum of 6 weeks so I am anxious to see how this works.

And now I need to get the laundry folded...

Day 634 - Feb 22, 2010

Kevin had the drain pulled out of his head this afternoon. I am so hoping that there will be no fluid build-up. I just have to keep an eye on the size of his head, I guess.

He is still in a LOT of pain when he gets up out of bed though, but that's about the only time. I really am a little worried about this as I just can't imagine him not being able to get up out of bed much for months on end, but hopefully it will get better as time goes on.

He is going to get a Picc Line over the next day or two as well because he is going to be on IV Antibiotics for quite some time. I guess we can either have a visiting nurse come and administer the meds (wherever we are) or I can learn to do it myself. Gotta give some thought to which way I want that to go, but I'm going to wait and see how hard it is.

And to Army Mom, I don't know how long we will be here (it may be many months, it may be a year even) so I am going to put Breezy's address here for you to send Kevin a letter. I will also put it in the column on the right.

Kevin Kammerdiener
3500 Oakgate Dr
Apt 1101
San Antonio, TX 78230

And to Diane and Mary Jo - I can't believe you went into the pool! The water has to be 50 degrees, lol. You guys are just nuts! Enjoy though - and have a safe trip home!

And I think Moe is on the right track - nobody should tell us when they are coming. This way we might just be there.

Ok, off to bed for me. Kevin is staying every night by himself now. He did call me a couple of nights ago at about 1:30am and I went back up to the hospital for almost 2 hours, but other than that he has been excellent. It stems from everyone in the hospital treating him like he is their best friend. All of the nurses go in and visit with him every day just for fun. He is having a blast. And I love to see him joking around with all the guys and he sure does flirt with all the ladies, lol.

It just makes my heart sing to see the strides he has made since coming here. I was so scared that we would take that plate out and he would go back to what he was in the beginning. But he is really coming a long way each and every day. At this rate I won't need to worry so much about him going to that TBI facility.

I just wish he would be medically stable forevermore...

Day 633 - Feb 21, 2010

I am going to skip writing tonight. I'm just not feeling up to par.

Day 632 - Feb 20, 2010

I am writing early tonight because I need to run to Walmart at midnight when I leave the hospital and get Kevin some more food.

Hallie - you just mentioned that you were concerned about how Kevin feels about himself now that half his head is gone and I have to admit I am a little worried about it too. He is adjusting kinda, but you can tell it really bothers him because he rubs it all the time and pulls the mirror out of his tray to keep looking at it. He always has such a sad look on his face every time he sees it too. It really breaks my heart.

I also asked him if he wanted to record a video for the blog tonight and he was adamant in saying "NO". He told me no way while his head looks like this. I did tell him that he would have to get used to it and that it will be better once his hair grows back in, but he's just not ready yet. It's only been a few days so I can be patient, but I will just have to keep an eye on him.

As for when the plate will be replaced, we just don't know. We do know it will be at least 3 months.

He also does not have to wear a helmet, but we were told if we want to we can go buy a skateboard helmet. Our surgeon is a little different in believing a helmet isn't necessary so I just need to decide if I want him wearing one or not. We do all have to remember that we didn't have one the last time and he was way more unsteady on his feet back then.

And to Kathy in IA - I guess all of the cultures came back negative?! They think it's because he was on the antibiotic for 5 months and that's why. We are using a broad range IV antibiotic for treatment so I guess we'll see what happens.

As for the pain - we are working on trying to manage it better, but I still wouldn't feel comfortable taking him home. What I am seeing is is that he is in a lot of pain and very dizzy every time he gets up out of bed. I am hoping this will go away pretty quick, but I worry it's a fluid issue due to the plate being out. Time will tell, I guess.

Kristen - please call me! I left your number in FL so I can't call you. Afternoons and evenings are best. I can't always answer, but you can sure try. And I love you too! And Travis!

And to my two other friends from home in PA (Diane and Mary Jo) - I hope you are enjoying visiting our home. I cried like a baby this afternoon because you arrived in FL to visit us and we are in TX. I just hate that every stinking time someone I am friends with comes to visit, Kevin gets sick. This sure is a lonely endeavor (among so many other adjectives) and I really miss all of my friends.

Oh well, it doesn't matter I guess. Just take care of that darn cat of Kevin's and eat as much as you want. I am glad that someone is there to make the house look lived in. I so wish we were there with you though. Next year you aren't buying your tickets until the day before you can come. That's what Moe learned to do, lol.

OK, enough about this. I am going to go watch Happy Gilmore with Kevin. Like we haven't seen it 300 times already, haha.

Day 631 - Feb 19, 2010

Guess where I am? Again? Yep - the Fisher House!!

Kevin did really well last night. He did call the nurses quite often, but he never called me once. Not at all!

So when I went in and started through the day, we discussed it and he felt good enough about letting me come 'home' every night. Yes, I know there may be nights that he won't want me to or even that I won't want to if he is really sick or something, but this is a HUGE step toward building his independence.

This is really just such an exciting step too. It makes me feel so good to see him progressing like this. It just gives you such hope that he may really be closer to normal someday than we ever thought to wish for.

And man...I can't tell you how awesome it was to sleep. To just sleep. I slept hard last night and it felt so good. I am planning on it tonight too, lol.

And that's what I am going to do right now. I will leave you with a photo of Kevin fake crying as I was getting ready to leave tonight.

Day 630 - Feb 18, 2010

I did something really hard tonight. I left Kevin at the hospital for the night and I am at the Fisher House all by myself. I discussed it with Kevin first and when he said he didn't mind, I then discussed everything with the nurses and they were all happy to work with me on the separation anxiety situation.

So at midnight, I left. I had to chuckle because I wasn't even past the nurses station (which is right outside his door) and he was already calling the nurse. I honestly have to attend to his needs and wants at least 200 times a night. I so feel for the nursing staff, lol.

We'll also see if he calls me tonight. I had to run to Wal-mart earlier this afternoon for Pop-Tarts and he called me twice while I was gone.

I guess we'll see, huh? Maybe he will surprise me!

And before I go, here is a photo of Kevin right before his surgery. He is with his WFRC (wonderful federal recovery coordinator, lol)


But now I am going to totally ditch the blog and truly go to sleep. Uninterrupted sleep. Can you imagine? I am so excited...

Day 629 - Feb 17, 2010

We are in a normal room now - out of ICU. Kevin has been doing very well, although he is in a lot of pain. No surprise there, I guess.

So it turns out that he wasn't leaking CSF as I had been told, but he was draining some of the infection from his head. We still don't know what bacteria has infected him as that can take up to 3 days. I sure hope it's just some minor bug and nothing hard to get rid of.

Unfortunately, that spot on the side of his forehead that I was worried about came wide open while he was in surgery. The neurosurgeon called in a plastic surgeon, but they decided not to worry about Kevin's appearance and just find a way to get it closed. This meant that they had to pull the skin taught from wherever they could pull it to get it to cover the large area. This means that he is unable to shut his left eye now and his skin is really tight.

My heart is just breaking for him.

One good thing (?) is that Kevin was nauseous late this afternoon and they gave him medication for it and it has knocked him on his butt. He has been sleeping for 6 hours already and I hope it continues through the night. We did have a couple bouts where he woke up completely out of it and we had to call the doc in, but she said it is a normal side effect to this medication. It just scared me because it was a blast from the horrible past.

I did take advantage of his sleep though and took a nice nap myself.

And I am going to quickly answer just a few questions and then read for a little while. First, to everyone - thanks for keeping my dad in your thoughts. He is doing somewhat ok, but it's going to be a rough road.

We also found out yesterday that they have indeed found a mass inside of my mother. She is going tomorrow for a biopsy.

And my sister and her husband were in a car accident the night before last. From what I hear, they are both ok.

Forget about 'when it rains it pours' - we are in the middle of a hurricane!

Jessica - you asked if Kevin has been on antibiotics for a while and the answer is yes - for 5 months now. We think it is partly why things weren't showing up on any blood work and tests that were done. He also had no 'real' signs of infection.

Hallie - you mentioned a functional MRI and if I remember correctly - you can't do an MRI on a patient with a shunt. I believe it throws the shunt out of whack, but that may not be the right reason.

There are a few more questions/comments, but most of them pertain to finding someone to spend time with Kevin. It's kind of a moot point right now, but I will say that because Kevin isn't as healthy as most of us, for now I was more looking for someone paid and insured for the trial run of this endeavor. Once I see that it works for Kevin to have someone come in, then I can go out into the community and have some kids or military personnel come in sometimes. As I said though - for now it's nothing we need to worry about. I think we are going to be here a good, long while.

And now I am going to leave you with a picture of Kevin from yesterday right after his surgery. He was much happier then because his pain was more managed.

Surgical update

This is just a quick update to let you all know that Kevin did have the plate removed today and when the doctor lifted it out there was the equivalent of a bowl full of puss underneath it. Who knows how long it's been infected, but I would guess a long time.

So we are in ICU and I still don't have Internet so I will fill everybody completely in when we get to a room that I can log in and really type from.

Day 627 - Feb 15, 2010

I guess I jinxed us last night as Kevin is now admitted to the hospital pending probable surgery tomorrow or the next day. When the bubble popped last night it was actually yellow CSF as opposed to clear. This typically means infection has set in so they are planning to remove the plate and everything else from his head. Nothing is definite yet, but everyone is leaning toward this option.

So anyway, there is no Internet in his room and I think it's safe to say that my posts will be sporadic, but I will keep y'all updated as I can.

Keep us in your thoughts please!

Day 626 - Feb 14, 2010

Happy Valentine's Day everyone! We did absolutely nothing today. Kevin and I never left the house, but Breezy and her boyfriend ran to the store a couple of times. I cooked a big dinner for all of us and then we all just sat and watched tv.

Kevin is doing well, but a new huge blister is forming on the same spot on the back of his head as the other day. I am hoping it makes it until Tuesday so that the doctor can see it, but I doubt it does. It's getting quite large and is very inflamed and painful for him.

I have to say I wish I would've known that we weren't 'really' going to be seen until Tuesday because I wouldn't have rushed around to get here in one day. Unfortunately, a certain doctor we saw last week was quite the alarmist and had all of us freaking out, hence the rush.

But it's ok. I do feel better that he was seen and I was told it was ok to wait until Tuesday before any in-depth look at the situation. I trust these guys here more than I have trusted any neurosurgeon since this all began so I am ok with the wait now that I know it's ok to wait, kwim?

Day 625 - Feb 13, 2010

I don't think I explained myself very well when I said the docs sent us home until Tuesday; what I meant was that we are at Breezy's and that we weren't kept at the hospital. They had planned to admit Kevin when we arrived, but they didn't feel it was necessary once they saw how well he was doing.

So we are still in Texas and will be until at least next week. Maybe much longer, who knows.

And Kevin and I didn't really do anything today. We both slept until really late in the day, probably because we were so tired after yesterday.

But here is the picture I took of Kev in the plane. You can just see how excited he was, huh?


He sure loved that flight, lol.

Day 624 - Feb 12, 2010

I am extremely exhausted tonight so I am just going to tell you that we made it safe and sound. Kevin was ecstatic because we got to ride in a corporate jet all by ourselves. He was so excited.

We also went to the hospital for a work-up once we got here and so far everything looks good. They sent us home until Tuesday, unless Kevin starts to drain more CSF. In that case, we rush back to the ER.

And now I am signing off and hopefully getting settled in to go to bed. I am just so tired...

Day 623 - Feb 11, 2010

Remember how things were all rosy yesterday? Remember how good I felt about the new doctor? Well scratch that!

Kevin started draining CSF out of the hole in his head at about 3am (he didn't pick at it, but it started when he lay his head on his pillow). I talked to the answering service last night and to cut the story way short - the surgeon called early this afternoon and told us that he just didn't feel he can be Kevin's doctor.

He explained that due to the opening in Kevin's head, the chances are good that he has already been infected with either MRSA or Meningitis and that he feels we need to go back to the VA or BAMC. He just doesn't feel he is a good fit if Kevin needs to be hospitalized for 6-12 months as he will if it is infected and the plate needs to come out.

So I have literally been on the phone for the last 8.5 hours and we are now booked on a private flight tomorrow afternoon for Texas. This organization - Veteran's Airlift has decided to help us get there and I can't tell you how much I appreciate this.

And now I have to get back to laundry and packing and bill paying and cleaning and gosh knows what else before leaving tomorrow.

Wish us luck!

Day 622 - Feb 10, 201

I am ecstatic because we went to see the new neurosurgeon today and I REALLY liked him. He was extremely kind to Kevin and he also took the time to explain so much to both Kevin and I. He even went over the CT scans with both of us and he showed Kevin where his brain was gone. It was the first time Kevin physically saw that instead of a circle showing the whole brain, the left side is cut off about an inch or so in from where it would normally be. He also explained all the 'dead' spots. I think most of it went over Kevin's head, but it was still nice to have him explain it all to us.

So he feels good about things with Kevin, but he did say that Kevin needs to not touch the two spots on his head where the skin is bad. He worries about the skin breaking open and meningitis setting in. So for now, I am trying my hardest to keep Kevin's fingers off of his head. Not an easy feat, I tell ya!

It was also interesting to see the doctor ask Kevin to do certain things and how Kevin responded. Like when he asked for Kevin to stick his tongue out, Kevin held his arm up. When he asked for a thumbs up, Kev opened his mouth. Kev just really struggles with those kinds of things, but we always have to focus on the good, right?

So we go back in a month for another CT scan and then directly to the surgeon's. We will have a better understanding of things at that point, but I was told that Kevin does not have an infection. The culture came back clear! YAY!!

And I am going to sign off now. My brother is staying here for a few days and although both he and Kevin were teasing me because I scrapbook - they are both sitting here looking through each one of them. It's a nice family moment and I want to enjoy it.

Day 621 - Feb 9, 2010

I am going to skip tonight. Kevin and I are just sitting down to watch Lord of the Rings and we all know that's a three hour movie so I will catch y'all tomorrow night.

Day 620 - Feb 8, 2010

It was kinda another slow day today. Kevin went to therapy with Parshall while I made a bunch of phone calls and worked on organizing a pile of paperwork. Nothing too exciting and I think you are going to find it more frequent where I don't really have anything to say.

Poor Breezy had another kidney stone last night though. She called me and it killed me not to be there with her. She did call this afternoon - thankfully - and tell me that it must have passed because the pain finally went away! Poor thing...

And that's really about it, so I think I am going to curl up with a book tonight.

Day 619 - Feb 7, 2010

We had a very lazy day today. My family came down for dinner and that's about it.

I am excited to say that Kevin played XBox for a while tonight though. He lasted longer than ever before and that excites me. He gets so frustrated because he can't use that one handed controller very well, but I keep telling him that he just needs to practice. So tonight he pulled it out and started playing. I wish Maxim would get the 21 year old hired already!

So there really isn't anything else to tell you. I think I will sign off and scrapbook for a while.

Day 618 - Feb 6, 2010

I took Kevin to the emergency room again today. The area that the drain came out of (in his head) back in November had a huge blister over it when we got up this morning. For days now, I had been watching it build up and today it finally started 'leaking'. So I took him in to have a culture done. I know it can take up to 3 days for certain bacterias to show up, so we should know something by Tuesday.

Oddly enough we were at the emergency room the same time my dad was. His stitches came undone and his stomach was gaping open. They restitched him and sent him home.

So after we all left the hospital, we went to my Mom and Dad's and had dinner. That's about it for today.

I did want to answer Kathy in IA's question. She asked if Kevin remembered everything by looking at the boxes (in the store) and the answer is yes. Kevin remembers everything by visual stimulation. EVERYTHING. He only struggles when you try to jog his memory through words. Even people that are close to him, but that we don't see all the time, he will forget who they are. As soon as he sees them though, he remembers everything about them.

Sometimes though, he will remember someone by an event. For example Janet who lives here in Tampa - but we have only seen while we are in Texas. When I mention Janet, I have to say "remember the woman with the long blond hair that we went to Chick-Fil-A with that day?". As soon as I say that - he knows exactly who she is. (BTW Janet - I am so glad Matt's surgery went well this time. I will call you soon!)

I can't just say 'remember Melissa from work' though. We did that tonight because a woman Kevin worked with at Riverside sent me a message on Facebook, but it worked out because I just showed him her picture. As soon as he saw her face he got all excited.

Kevin, for the most part, remembers almost everything. It's just names and things like that. Even the names of objects. He doesn't know the name of a plate or a fridge or the washer. But he knows what each of those things are and what they do. It's so strange, huh?

And to sign off - to all my Western PA friends - I feel for you guys! 24 inches of snow!! It just proved to me that I did the right thing though. Kevin needed to get to a hospital today and I could have never gotten him there if we were still in PA. This may be a very lonely existence, living in Florida - but at least I can take care of Kev without worrying about snow and ice.

Day 617 - Feb 5, 2010

We didn't do anything today so I am going to skip writing. Catch y'all tomorrow!

Day 616 - Feb 4, 2010

Would you believe that Kevin slept a full 8 hours straight last night/this morning? I actually left at 1pm to run to the DMV and he was still sleeping. Unbelievable! And it made such a difference to how he felt all day. You could just see how rested he was. I sure wish he would sleep like this every night.

So we didn't really do much today. I came home from my errands and Kevin and I went for groceries and it was kinda fun because we were there over 2 hours. We went up and down every single aisle and looked at everything. We just never do this. I hate shopping so I always just go grab what I need and get the heck out of there. Kevin loves to shop though. Mostly he just looks at everything and I think it's good for him. More often than not he remembers things from his past so it's almost like therapy.

And really that's all we did. We didn't have to go see my dad today because he came home from the hospital. I wanted to give him quiet time at home on his first day, but we will probably go see him tomorrow. Hopefully anyway...

Day 615 - Feb 3, 2010

Kevin and I spent the whole afternoon at the VA hospital having tests done. I took a look at the CT scans with the doctor and she actually explained to me how to 'read' them. Kevin definitely has some fluid buildup both on top and beneath the plate. It doesn't appear to have changed any since Dec though so I am not overly worried.

I did ask the doc to send us to a Dermatologist though. Maybe they will know what that spot is on Kevin's head? It's worth a shot so we shall see.

We also visited my dad who is back to his normal self. He is able to eat solid food now and they told him he may actually get to go home tomorrow. YAY! Amazing, right? Two days ago we thought he wouldn't ever get out of ICU and now he may be going home. I guess we can see where Kevin gets it, huh?

Day 614 - Feb 2, 2010

Haha. Kevin was just trying to talk me into jumping out of an airplane. That boy is NUTS! Seriously - he was just 'talking' about how fun it was and how proud he feels that he did it. And he just kept pointing at me basically telling me that I need to try it. He is just so hilarious, eh?

So today I left Kevin with Par and went to see my dad for a while. My dad is doing so much better. I have to admit that I was getting worried because he was all messed up cognitively, but today he was finally normal. And he got moved out of ICU too. They thought it would be a while, but they pulled one of the drains out of his stomach and sent him upstairs. He still has four more that need to come out, but hopefully over the next few days.

And while I was gone Kevin found his camera in amongst all of his Army stuff. He musta grabbed some batteries out of the drawer and he proceeded to take pictures of Parshall and her daughter Jeilah (Kevin was grumpy about having to stay home so I had Par bring Jeilah to keep Kevin entertained. He really just loves kids). So here are some pics:

The first one Kevin took of Parshall and Jeilah:


And this one Parshall must have taken:



Cute, huh? Kevin really loves taking pictures too. I think I am going to have to 'push' this hobby a little bit. I just don't know how he does it with one hand to both hold the camera and snap the picture, but he does it and he does it well. I am just going to have to remember to grab his camera when I am grabbing mine.

Day 613 - Feb 1, 2010

I had planned to take Kevin over to the hospital today, but it turns out my Dad now has MRSA. I plan to keep Kevin as far away as possible, although since we were there yesterday and didn't know about it - any damage could have already been done. I really just wish things would work out for my dad, but things aren't going as well as the doctors would've liked. I am keeping optimistic though. Always.

So instead, I went with Kevin to therapy and spent the time making phone calls. I also ran and picked up the forms for a handicap parking pass. Can you believe we aren't even able to park in a handicap spot (legally anyway)? There is just never time to do paperwork and I need to make it a priority.

Other than that, we just spent the rest of the day at home. We started to watch a movie tonight, but Kevin just couldn't get into it so he went to his room. At least he tried to stay in the living room - it's a start anyway.

And I think I am going to sign off and watch some mindless tv.

Janet - it was so nice to see your post! Are you in Tampa? If you are, I would love to get together!

Day 612 - Jan 31, 2010

We didn't really do much today. Kevin and I did go and visit my dad for a little while, but really that's about it.

One thing I did do though, was teach him how to make french toast. As soon as he grabbed that spatula, he started flipping those babies like a pro. Lucky for me my camera was right there:


Ummm...this one went a little too high and he didn't catch it on the way down, lol.


We had fun doing this today and I can only hope that he will be more willing to learn to 'cook' some more types of food. I would like to get him to the point where he can pop a frozen pizza in the oven and know when it's done and maybe even cook something 'real' and not frozen. We'll see though. It's something that I will work on as it comes up, but it's not one of the things I am going to push yet.