Day 749 - Jun 17, 2010

We had a really good day today. We had to go to the hospital for a video conference with our plastic surgeon (he is actually from Maryland and comes one week a month to work on the burn patients) and then Kevin had his stitches removed. He did really well with that and then Kev wanted to go visit everyone on the burn ward. We did visit for a while and then we headed toward home.

I did learn some things today. First, Kevin will begin to have between 30 and 40 CCs of saline solution put into his expander starting next week. We will continue to do this until roughly the last week of August when we will have the plate put back in (once again - barring any infections). Kevin needs to have a CT scan done of his head pretty soon so that the plate can be ordered too. It takes about 4 weeks to have one made.

I have also decided to detox Kevin beginning Jul 7 - a day after his birthday. I am already starting the process, but Kevin will be admitted to the hospital on that day for roughly 10 days as we pull him off of the methadone. At this point, we are adding methadone, hoping to eliminate the oxycontin. Apparently there aren't as many side effects from decreasing the meth as there are from oxy. I am scared to death to do this, but I am trusting the docs on this one.

We also have a dentist appt on the 29th of this month and our team at BAMC wants Kevin to have ALL of his dental work done before this plate is put in. This will be interesting as we are having the work done at a VA clinic and we all know how slow they are. Personally, I can't see it happening and I only hope that I am proven wrong.

The thought process on this is dental work also runs the risk of infection and we want all possible infections treated before the plate is reinserted. If Kevin's new plate were to get infected, I believe he would have to wait a full year to have a third put in. That would be horrible!

And this pretty much wraps up our day. Here's hoping tomorrow is another good one!

Day 748 - Jun 16, 2010

I am really sorry that I didn't check my post last night. I always do, but Kevin was impatient to get the game started to I just hit the button and walked away without looking. I went to bed after we played a few hands so I didn't see it until later today. I really am sorry for those of you that worried unnecessarily.

So anyway, the case manager is working on different avenues to get a new mattress. She called today and feels our frustration and I am trying to feel confident that it may happen soon.

She did get the reverse osmosis rolling. I talked to the water filtration guy a few times today and it appears the water softener will be here next week sometime. I don't know if I mentioned that San Antonio water is not good for burn patients to shower in. I never knew about this, but I would hazard a guess that Florida water is no better.

And poor Kevin today. His shower stall is just a small one and because he can't get his stitches wet he had to take a bath today. When sitting in his shower, the water just beats down on his head and he can't get his head or face wet. So anyway, I helped him get into the tub, which is one of those garden tubs - really deep - and that went RELATIVELY easy. BUT, getting him back up and out of it - now that was a whole different story. We both struggled and after about 10 minutes of us trying to find a way to do it, I finally just crawled into the tub and basically lifted him out by grabbing him under his arms and around his ribs. Geesh does that boy need to lose some weight.

I so hope that they remove all of his stitches tomorrow when we go to see the doctor. Not sure how many days I can lift him out of that thing.

And the new aide came today. She was a very nice older woman, but I did reiterate that we would prefer a young man. They are going to keep looking for someone in the meantime.

Day 747 - Jun 15, 2010

Yay! We made it to the movie! Kev did pretty well, but there were quite a few subtitles and I realized about halfway through the movie that Kevin couldn't read them. Duh! Once I did realize that he wasn't understanding, I started to lean over and read them to him. That really helped. Sometimes I am a little slow, lol.

And tonight Kevin is just frustrated and angry. He is in his room trying to turn over his mattress because his bed is just so uncomfortable. I honestly don't know why it is so flippin' hard to get a different mattress?! I just popped off another email to the case manager and here's hoping that this time - it works. I'm not holding my breath, but I am ready to just scream. Kevin, on the other hand, is screaming. He is in there screaming "HOW LONG? HOW LONG?" and he's just crying in frustration and it is really heartbreaking. This is the kind of crap that just burns me up! Seriously - how much more does the kid have to suffer?

And tomorrow we have a new aide coming. Joseph just didn't work out. It's a shame really, but it is what it is.

Ok, I just challenged Kevin to a game of Skipbo. Anything to get his mind out of his misery.

(OMG! I wrote this last night, hit the post button and walked away. I didn't realize there was an error! Sorry for alarming anyone!)

Day 746 - Jun 14, 2010

We came home from the hospital today!! We got home late-afternoon and by the time I got Kevin all situated it was time for dinner. Breezy came over and we had apple streusel (sp) pancakes (although Kevin had choc chip pancakes) which truly did sound better than they tasted.

Anyway, and I shit you not - Kevin already looks like one of the coneheads from SNL and it's only week 1. Every week for 2 months they will put more saline solution into the sac on the top of his head, just under his skin. If you all remember what he looked like in the beginning, imagine all that fluid being built upward on the top of his head. We thought we were going to be able to cover his head with a hat, but it's pretty clear at this point that that's not gonna happen.

This is going to be a really rough 2 months. Kevin chuckled when he first saw it today, but I feel safe in saying that he will probably refuse to go anywhere within the next couple of weeks. I know I wouldn't step foot out of the house looking like that. Call it vain, call it whatever you want, but I wouldn't do it.

I just feel so bad for him.

So, I am planning to take him to see The Karate Kid tomorrow. I figure we better go see the movie real quick or we won't be seeing it. And then there's Toy Story next week - yahoo!

And yes, I know I could be wrong - maybe it won't faze him in the least, but I want to try to get some fun in now just in case.

I also need to decide whether to throw a little birthday party for him and Breezy. Parties are not easy for him and who can say what his mindset will be in a few weeks. Then there's the question of whether or not I have the energy to put together something like that.

Oh well, I guess I'll think about it tomorrow. I'm just too tired to tonight.

Day 745 - Jun 13, 2010

Today was pretty rough. Kevin was just angry all day. I got tired of it a few hours into the afternoon and left. I just can't sit there and be treated like a piece of crap and he needs to learn it.

Unfortunately, he's been angry/miserable for a while now and it's just been getting worse and worse. I am sure it's that he is completely aware now of the changes in his life. It's also hard for us to see an end to the surgeries and therapies and it's hard to believe that we will ever have some form of normalcy.

In all honesty, for the last two years Kevin has lived in this haze of sorts that kept the reality of his life from him and the haziness is now gone. Sure he had moments where clarity reigned, but it always left as fast as it came.

Now he sees it. And there's no escaping it. And now we both just need to figure out how to deal with it.

I can only hope we figure it out rather quickly. There is absolutely no pleasing him and neither one of us can live this way much longer.

Day 744 - Jun 12, 2010

Kevin is doing pretty well today. He did sleep quite a bit for some reason, but we did manage to go down to the cafeteria for lunch.

He has a nurse all to himself tonight and the guy planted himself in Kevin's room and was doing things with him. I asked Kev if I could leave early as I had laundry to do and he was having such a good time with Glenn that he didn't care at all. Kev was in the process of showing him all of his videos and they were even skimming parts of "Out Cold" - Kev's favorite movie of the moment. This guy was really great with Kevin when we were in-patient the last time so I was really happy to see him tonight.

I did think we were going home today, but obviously we didn't. I am hoping we get to go home tomorrow, but I'm not sure. He seems well enough to me, but I heard (in passing) that they were keeping him partly so that I could have a break. I don't know if it's true, but I'm not gonna lie and say I don't appreciate it. It's been very rough lately dealing with all of the pain issues and being homebound. Kevin has really been miserable a lot the last couple of months and it just weighs so heavy on my heart to see him like this. I just wish there was a way to make him feel better.

So anyway, I am going to sign off early. Finally - FINALLY - I am going to watch Avatar! I was so adamant that I was going to see it at the theater in 3-D, but Kevin refused to go and there just wasn't time for me to get out and see it without him. Crazy, huh? It was in the theaters for months and months! But no matter - I am already about 20 minutes into it and am so impressed with what I'm seeing so far.

Day 743 - Jun 11, 2010

Kevin is doing fantastic tonight. It took him until about 3pm to really wake up and move around, but once he did he started eating and drinking and he even got up and we went for a couple of walks.

So I have a couple of pictures for you guys. The first is what Kevin's eye looks like right now (excuse the black line in the photo. I am too lazy to fix it):


I can't wait to see what it looks like once the swelling goes down!

And this next one? Oh yeah. We have some pretty funny doctors here at BAMC. Seriously, I am gonna kick some butt when I find out who was behind this, lol. I can only assume that this is the way someone is playfully getting back at Kev - the ultimate jokester. He always makes everyone laugh and I can't tell you how hysterically we all laughed when we saw this:



Yep!!!! When they shaved his head they left a rattail!!! When Kevin was walking it came to our attention and there was a whole bunch of nurses in the hallway and we were all doubled over with laughter! Kevin just kept shaking his head in mock disgust. It was just so flippin funny!

I'm anxious to see if they left something else under that bandage, hehe!

Another Update

Kev just called me on the phone and is agitated that they weren't on time with his meds. All is back to normal, hehe. I don't know if I ever explained but if the nurses are even a minute late - and he has a watch to time this - he is screaming "PILLS" and ringing the bell like a mad person. He really does have extreme OCD.

Well, gotta get to the hospital. They are moving him back to his room in a few minutes.

YAY!!!

Day 742 - Jun 10, 2010

Ok. So although Kevin did very well in surgery, he just won't wake up. I am only allowing myself to believe that it's because he did have a lot of anesthesia as it was a very lengthy surgery with multiple surgical sites.

BUT - in reality - there is a chance it could be because of the expander having to be placed over the shunt tube. There just wasn't anywhere else to put it. I was very happy to hear that the neurosurgeon sat in on the whole entire surgery (4 1/2 hours) and that the tube has actually grooved itself into Kevin's skull, but it still could have put pressure on it that will make it where the CSF can't travel down to his belly. I will know more in the morning as he surely will be awake by then if it's just anesthesia.

I did come home tonight. I wasn't going to - it was very hard to do - but he was so out of it there was no sense me staying and torturing myself. He was a bit combative when he would rouse for 30 seconds or so and both Breezy and I had to leave for a bit when he shoved her away. He didn't realize he was doing it, but it was like deja vu. It was exactly what it was like in the beginning. We both had to step out and just cry for a bit.

But, we are going to end on a good note. Kevin really does look great. His ear is normal shaped now and his eye looks fantastic - and it will look even better once the swelling goes down. I can't see what his neck looks like as it's bandaged and I can guarantee he will be very deformed in the head (one side sunken and the top abnormally large over time), but still...he looks wonderful to me!

So ok, Buddy...it's time to wake up now...

Update

Kevin's surgery is complete. The doctor just came in and said that everything went very well! They did everything - put in the expander, fixed his eye, cut out the ridged scars along his neck and removed the lump on his ear! YAY! Now let's just hope nothing gets infected and if that's the case - we are good to go!!

Day 741 - Jun 9, 2010

We are ensconced in the hospital and Kevin is trying to get some sleep. They had to put him in a double room this time, but no one is in there with him so I commandeered the other bed. I decided to stay tonight as his surgery is in the morning sometime so I actually have a bed instead of a cot - yipee!

Darn. They just came in and said the blood they got was no good so now they have to start sticking him again. It is so difficult to get blood from him because his veins are just so used up. We have to get some though, no matter how many pokes it takes. This is making me wish I would have just tried to do some of it yesterday. Grrr...

I guess I need to wrap this up as the nurse needs some help. Not much else to say anyway.

Day 740 - Jun 8, 2010

Yes! We are being admitted to the hospital tomorrow and the charge nurse told us that she would just do all of his pre-op testing when we got there. I guess they are only taking blood - which really is the hardest of it all - but at least we didn't have to go down and do blood work in the lab.

After we had our doctor's appointment and visited the burn ward, we went and sat with Maritza and Jose for a good hour or so. Joel was having surgery today so they were in the waiting room. I sure missed them and so did Kevin. It's been rough being mostly homebound so today was a nice day visiting with friends.

I did have a talk with the pain doc too about Kevin's pain level. Both Kevin and I are very anti-pill, but this constant pain thing has got to go. The doc wants me to check Kevin into the hospital for 10 days (not this trip though) and we will start the detox process. We will know then if it's real pain in the head or if it's addiction. He wants me to think about it so I am going to sit down and run the pros and cons of doing it now vs doing it after the plate is put back in. No matter which way I swing - something has to be done. He can't continue to live like this when it's not really necessary.

So anyway, Michelle Long - you asked when Kevin would be getting the plate put back in and he will have to have the skin expander in for a minimum of two months. On the day it comes out - the plate goes in. This is all barring any infection, which as far as we know he is free of at this point.

IF his head gets infected with the expander, it will be removed and we will have to wait 3-6 months before it can be re-implanted. Let's just hope that doesn't happen!

Day 739 - Jun 7, 2010

So I guess Kevin is having his skin expanders put in on Thursday. I knew the surgery was tentatively scheduled for the 10th, but I never heard anything so I called the burn clinic today and found out it is on the schedule. Now we have to hurry and get all his pre-op testing done tomorrow. I don't know anything yet about how long he will be in the hospital, but we will probably get some answers tomorrow as we have an appt at the burn clinic in the early afternoon. I sure hope Kevin can handle all of the pre-op stuff at one time. I would prefer that they admit him a day early (unless this is an out-patient surgery?) to do all the blood work, scans, etc. This would give him a place to rest in between all of the tests, but I'm not sure if they will be willing to do that. I guess there's no harm in asking tomorrow though, right?

Day 738 - Jun 6, 2010

For some reason I can't log in to post from my laptop, but I can from my phone? No idea, but I will catch y'all tomorrow night.

Day 737 - Jun 5, 2010

Well, we made it to the picnic, but by the time we got there it was pretty much over. Kevin was just in a bit of pain most of the morning and there's just no sense even trying to go anywhere when he is already hurting. So we got a much later start than I had planned on.

Other than that, we did nothing today. We came home and played a few games of Skipbo and that's about it. He was hurting pretty bad most of the rest of the day so he mainly stayed in bed.

So I guess I'll just answer a few questions/comments:

Hallie - my thoughts are with you and your husband. I feel confident you will have the strength to get through it - it always just seems to come from somewhere!

Janna - I gave a lot of thought to what you said about me knowing the real Kevin more than a therapist that spent an hour and a half with him. Truthfully, I have given a lot of thought to that whole episode period.

I think that Kevin does know the bulk of what we are saying/doing. I think he understands the important parts of a conversation and let's the unimportant parts fly by because who really cares, right?

For example: the story mentioned a woman named Anna who lost a ruby ring and she cried. When asked if her name was Anna he said yes. When asked later if her name was Amelia he said yes. Who cares right? When asked if it was a diamond ring he said yes. Later when asked if it was a ruby ring he said yes.

He knew the story was about a woman who lost her ring and she cried. He did tell us that, but he didn't know the specifics and I think it's partly because it wasn't important to him.

Now if it were Breezy and she lost her red ring he would know the who, what, when, where and why. But he really didn't care about the person in the story because it didn't affect him.

Now obviously he is cognitively impaired. If he weren't - if he were completely better - he would remember the person's name, the kind of ring, etc. And I am aware that he is impaired and it didn't come to me until way later that he does understand the things that do affect him. He does understand the things that affect myself and Breezy. The things that are important to him.

Something else that made me think about his memory is getting gas yesterday. We got gas and although I never look at the price, for some reason I did while I was pumping. Probably about 15 minutes later, when we were on our way home, Kevin said 2-6-7. I had no idea what he was talking about so he made the sounds and the hand motions of someone pumping gas. I still didn't know what that had to do with it, but then it clicked. $2.67 per gallon. He remembered how much the gas was. So if he can remember that 15 minutes later he obviously can recall things that are important to him.

I don't know...maybe I am just grasping at straws, but it just seems to me that if he can answer appropriately a lot of the time, he has to know what's going on around him. Ruby or diamond ring be damned.

Chalkie - thinking of you and Carol often. Will email you soon!

Kathy in IA - I have purchased those books at Walmart for Kevin to work in, but he absolutely refuses. I think it's because they are children's books. The therapist mentioned some adult papers so hopefully we get them before the year 2020. (yes - some VA sarcasm - still no bed, still no one handed soap dispenser, no reverse osmosis, and on and on)

Lorraine - I can't believe that Rick got a tattoo of Howard the Duck on his chest, lol. He is such a character!!

Karen in Vancouver - thanks for your comments. Kevin and I have started to slowly read the blog from the beginning too. It's amazing how many things I was told that I didn't retain (due to probable shock). Honestly, I didn't remember that the doctors cut out part of Kevin's brain - all this time I thought it was just dying off and reabsorbing into his system. It makes sense though. The CT scan shows an exact line where it was cut and I often thought that was weird.

Ok - this has become a book. Off to bed for me...

Day 736 - Jun 4, 2010

Kevin has been very angry for about the last week or so because he can't go anywhere by himself. He wants to be able to jump in the car and just go somewhere although when asked where he wants to go he just screams "I don't know!!" He does understand that he can't go anywhere by himself - not totally anyway - but I think he's just tired of being in the house and tired of being with the same person day after day.

So today, Joseph and I took him to Dave and Busters. D&B is basically an adult arcade and you should have seen Kevin's face when he was walking closer and closer to the game area and was finally figuring out what we were doing. I wouldn't tell him for the last couple of days where we were going, just that it was a surprise and we were going to a fun place.

And he had a blast. We were there close to three hours. I did have to medicate him twice, but he didn't want to leave no matter how much pain he was in. Finally though, he was in sensory overload and we did go home, but after we were home a bit and he rested - he wanted to go back!

For me, it was so great to see him having fun, but it did make me think again of how sucky his life really is. Putting aside all the medical stuff - he has no friends, he is usually in too much pain to do anything and if he felt well enough he has no way to get out and about without his mommy taking him. Pretty bad for a 21 year guy.

Hopefully, once the plate is put back in his head, he will feel better and can start doing things. Things with the Wounded Warrior Project and other wounded soldiers. Maybe he and Joseph can go do things too; fishing, concerts, who knows...

Tomorrow we are supposed to go to a picnic with other wounded military personnel. I really want him to go and start doing things like this, but he doesn't want to. He's just not a picnic kind of guy so I imagine I will have a fight on my hands in the morning. Keep your fingers crossed.

Day 735 - Jun 3, 2010

Well, the speech pathologist came today and it was a pretty decent session. Kevin made it about 1 1/2 hours before he went back to bed.

He did exceptionally well with all of the visual stuff. He remember patterns easily, when showed a picture he could either say the word or tell you how many letters were in the word, he seemed to read quite a bit and he was able to draw lines from shape to shape, small to large on request.

Where he struggled was with verbal therapy. Today showed me that Kevin really doesn't either understand as much as I thought or he just can't retain what he just heard completely.

For example he was read a story with maybe 10 sentences. When asked questions after the reading was done, he couldn't really answer correctly.

And I really don't understand this, but when Kevin was asked what his name was he said "Kevin". But when she asked if his name was Brown he said yes and when she asked if his name was Smith he also said yes. That stumped me completely because he knows his name is Kevin - he will tell you his name is Kevin - so how could he not know his name wasn't Smith or Brown?

I was kinda sad after she left because he really had me fooled - again - and I just want him to be better so badly. I know...I know...there's still time for him to recover, it's just I really did think he understood almost everything I said. He almost always answers appropriately - I really don't understand how he does it.

But anyway (gotta stop blubbering so I am moving on), one cool thing was that she read directions for Kevin to draw a clock and put the hands to 10 mins past 11. He wrote all the numbers correctly and even put the hands in the right place. It was impressive to me that he could do that, but it was even more impressive that she read all of the directions at the same time and he was able to do it all without needing anything repeated. (so he remembered this, but not the story? maybe cause it was only 2 sentences?)

Anyway, if you remember from many months ago while we were in FL, we were working on him following multiple directions given at one time - like sending him into Walmart for bananas and bread, but you may also remember that back then he only ever remembered one item.

I am going to take this as an improvement. After today, I guess I need to focus on the improvements we do have and I need to be realistic in what I am seeing and not what I am wanting to see.

Although personally, I like the world where I see what I want to see so much better...

Day 734 - Jun 2, 2010

I hate to skip again, but I have been sitting here with my computer on my lap for over an hour now and I just can't think of anything to say. We didn't do anything at all today - Kevin barely got out of bed - and that pretty much leaves me with nothing exciting to talk about.

Tomorrow I should have some information as the speech pathologist is coming. I am excited too because she is bringing some cognitive tests with her and I can't wait to see what she says!

Day 733 - Jun 1, 2010

I can hear Kevin in his room practicing his alphabet song. I have been really working with him on more words and him being able to sing his ABC's. He is really doing fantastic - he is up to the letter G and he says everything so clearly so far.

He is also able to say 'turn off the lights' now, but he still struggles getting the sentence out when he needs to say it. Most of the time I have to make the "t" sound as my finger is on the light switch. This will prompt him to say it. He often needs a little nudge in the right direction.

I do think that maybe 5 years or so down the road Kevin will be able to have some amount of conversation, but I think he will always have to think about how to say what he wants to say. I believe that at times the wrong sentence may come out of his mouth as well, but really...who cares, right? If he could just communicate with his friends and those around him that would be so wonderful.

I am excited too in that a speech pathologist is coming to the house on Thursday to do an evaluation on Kevin. She's not sure she will be able to continue to come, but she can at least help me to best know how to train him. So far my teaching has been by trial and error and I look forward to some guidance.

And that really sums up this post. It's been a bit of a rough few days, but it's time to wipe the sweat and drive on, right?

Right!

Day 732 - May 31, 2010

I am just going to skip writing tonight. I hope everyone had a great Memorial Day!