First 2 from the Nov kit!
13 years ago
Wednesday, December 31, 2008
Day 214 - Dec 31, 2008
Happy New Years! I am going to pass on writing tonight - will catch y'all next year (haha - cheesy joke)
Tuesday, December 30, 2008
Day 213 - Dec 30, 2008
Today my beautiful daughter and my parents passed each other in the skies - probably over one of the Carolinas, lol. Breezy went home for a couple of weeks and my mom and my dad came to visit for a whole week! I actually cried while driving to the airport the second time today to pick my parents up. Although my mom has been to see us 2 or 3 times, I haven't seen my dad in over 7 months. It's just so hard because I really miss my family and my friends.
Kevin was really excited to see them too. I wish his head had been tapped before we got back, but he did at least show some emotion when they walked in. And once he was tapped - he was really happy to have them around.
We had a really rough time getting fluid off today though. It was way over an hour and we finally stopped at a little over 200 CCs because we just couldn't get anymore out. Yet his head was super large today, which makes no sense to me. I suggested to the doc that we tap him twice a day and see if it's any easier and he agreed to try it tomorrow (usually the first 100 CCs happen in 10 minutes or so). Maybe this way he will be well enough to do his therapies and keep going through the night. As it is now, he is only 'good' for a few hours and then he's back to barely moving and there is just nothing there emotionally either. It's honestly like night and day.
And now I am going to end by adding a poem to my post. This was written by T. Beechey and it was posted as a comment to last night's entry. I cried when I read this and to be honest, I am still crying. Thank you, T!
JUST A SOLDIER – A Tribute to Kevin Kammerdiener
(T. Beechey)
He wasn't rich or privileged, he was just like you and me
He came from a good home and close-knit community
Everyone that knew him was glad to call him “friend”
Whenever there was trouble, on him you could depend
When he first heard the calling to join among the ranks
Of the brave men and women in the Humvees and the tanks
He didn't hesitate a bit, his duty was at hand
To fight the fight for freedom for the glory of his land
He was being just a soldier, doing what he had to do
And he did what he did for the Red, White, and Blue
Proud to serve his country and proud to do his part
He gave all he had that was in his heart
Dressed in the gear of combat, those beside him dressed the same
He wasn't seeking fortune, he didn't quest for fame
All that he desired was to serve his Nation well
And to come home safely with a tale or two to tell
The tasks he was given, he never questioned why
It wasn't his to query, so he dutifully complied
Because he was a soldier and he had the job to fill
The shoes of those before him who walked a distant hill
He was being just a soldier, doing what he had to do
And he did what he did for the Red, White, and Blue
Proud to serve his country and proud to do his part
He gave all he had that was in his heart
On a day that we'll remember in the month of May
This soldier bore the burden of a hefty price to pay
He's no longer in the battle, but he still fights the war
Every day is a challenge just like the one before
And he meets every challenge with the same bravery
That he showed as he stared in the eyes of the enemy
He still is a soldier in each and every way
And he's the reason I'm proud to live in the USA
He will always be a soldier, doing what he has to do
No matter what's in front of him, he'll always make it through
Proud to serve his country and proud to do his part
The Nation holds you, Kevin, in its collective heart
Kevin was really excited to see them too. I wish his head had been tapped before we got back, but he did at least show some emotion when they walked in. And once he was tapped - he was really happy to have them around.
We had a really rough time getting fluid off today though. It was way over an hour and we finally stopped at a little over 200 CCs because we just couldn't get anymore out. Yet his head was super large today, which makes no sense to me. I suggested to the doc that we tap him twice a day and see if it's any easier and he agreed to try it tomorrow (usually the first 100 CCs happen in 10 minutes or so). Maybe this way he will be well enough to do his therapies and keep going through the night. As it is now, he is only 'good' for a few hours and then he's back to barely moving and there is just nothing there emotionally either. It's honestly like night and day.
And now I am going to end by adding a poem to my post. This was written by T. Beechey and it was posted as a comment to last night's entry. I cried when I read this and to be honest, I am still crying. Thank you, T!
JUST A SOLDIER – A Tribute to Kevin Kammerdiener
(T. Beechey)
He wasn't rich or privileged, he was just like you and me
He came from a good home and close-knit community
Everyone that knew him was glad to call him “friend”
Whenever there was trouble, on him you could depend
When he first heard the calling to join among the ranks
Of the brave men and women in the Humvees and the tanks
He didn't hesitate a bit, his duty was at hand
To fight the fight for freedom for the glory of his land
He was being just a soldier, doing what he had to do
And he did what he did for the Red, White, and Blue
Proud to serve his country and proud to do his part
He gave all he had that was in his heart
Dressed in the gear of combat, those beside him dressed the same
He wasn't seeking fortune, he didn't quest for fame
All that he desired was to serve his Nation well
And to come home safely with a tale or two to tell
The tasks he was given, he never questioned why
It wasn't his to query, so he dutifully complied
Because he was a soldier and he had the job to fill
The shoes of those before him who walked a distant hill
He was being just a soldier, doing what he had to do
And he did what he did for the Red, White, and Blue
Proud to serve his country and proud to do his part
He gave all he had that was in his heart
On a day that we'll remember in the month of May
This soldier bore the burden of a hefty price to pay
He's no longer in the battle, but he still fights the war
Every day is a challenge just like the one before
And he meets every challenge with the same bravery
That he showed as he stared in the eyes of the enemy
He still is a soldier in each and every way
And he's the reason I'm proud to live in the USA
He will always be a soldier, doing what he has to do
No matter what's in front of him, he'll always make it through
Proud to serve his country and proud to do his part
The Nation holds you, Kevin, in its collective heart
Monday, December 29, 2008
Day 212 - Dec 29, 2008
Nothing much happened again today. About the only thing new is that we can't use the lift anymore to get Kevin out of bed as it broke days ago so now he has no choice but to stand up while holding onto me and pivoting from his bed to his chair. It's ok for the most part, but some days he is just so exhausted when we get home from my house and I need to pay attention so that he isn't too tired to stand up and transfer himself.
I have also hired a reflexologist to work on Kevin. She came for the first time last week one day and in that one message, Kevin's leg is able to move higher and the arm that is always contracted so badly has been staying down to where his hand is on his belly instead of up at his neck. I have to admit that I was a little bit skeptic about it at first, but I figured it couldn't hurt. And it's a little bit pricey, but it's worth it if it works, right? So she will be back on Wed I think. I am anxious to see if it makes more of a difference.
We still haven't agreed on a price for the house either. I know what we can afford and I so hope it works out. I also hope we come to an agreement soon. I would like to get moving on this because it's so time consuming to find anything you like and the time to take Kevin home can arrive really quickly. It's truthfully been almost a month since we decided on that house and we are no closer to getting it than we were that day. At this rate - it may take a year to buy one! This is why I was in a sorta rush to find one - the amount of time it takes. Well, surely things will start rolling...
And I just want to point out that we arrived in Tampa four months ago today. I have to admit that time goes much faster here - probably because he is out of the critical stage and our days are full of new things. When we were at BAMC - it was pretty much always the same.
And although this whole ordeal sucks - we have to admit that the last four months have been pretty remarkable. Kevin has made HUGE strides and it makes my heart sing. Now if this cranioplasty can just fix this fluid issue...
I have also hired a reflexologist to work on Kevin. She came for the first time last week one day and in that one message, Kevin's leg is able to move higher and the arm that is always contracted so badly has been staying down to where his hand is on his belly instead of up at his neck. I have to admit that I was a little bit skeptic about it at first, but I figured it couldn't hurt. And it's a little bit pricey, but it's worth it if it works, right? So she will be back on Wed I think. I am anxious to see if it makes more of a difference.
We still haven't agreed on a price for the house either. I know what we can afford and I so hope it works out. I also hope we come to an agreement soon. I would like to get moving on this because it's so time consuming to find anything you like and the time to take Kevin home can arrive really quickly. It's truthfully been almost a month since we decided on that house and we are no closer to getting it than we were that day. At this rate - it may take a year to buy one! This is why I was in a sorta rush to find one - the amount of time it takes. Well, surely things will start rolling...
And I just want to point out that we arrived in Tampa four months ago today. I have to admit that time goes much faster here - probably because he is out of the critical stage and our days are full of new things. When we were at BAMC - it was pretty much always the same.
And although this whole ordeal sucks - we have to admit that the last four months have been pretty remarkable. Kevin has made HUGE strides and it makes my heart sing. Now if this cranioplasty can just fix this fluid issue...
Day 211 - Dec 28, 2008
I had my first really yucky experience trying to get Kevin into a Subway that claimed to be handicap accessible, but truly was not. I just couldn't do it. There was no way for me to hold the door open and lift his chair up the small 2 inch step at the same time. I was so relieved when a gentleman stopped his car and ran over to help me. Phew! What a struggle! And let me tell ya - I almost asked him to marry me, lol!
But seriously? That was just not fun. You just don't think about little things like half steps and doors that won't stay open while you enter. Just how do people do it that don't have help? How do people in a wheelchair open doors when they only have one arm that works and the door opens the opposite way? And how do you hold it open while wheeling past it if you only have one arm? I don't know - maybe I am just being dumb as I am still new to all of this. Maybe one night I'll be laying in bed and I'll hear that 'ding' that explains how it all works. Man, I sure hope so...
So when we left Subway (this has been a DAILY thing for over a month now. He even wanted it on Christmas Day!) I started heading home and I looked in the mirror and there was Kev already eating! He had unwrapped that sub and ate half of it while driving the three blocks to get home. I laughed so hard. And I just love it when he does things that he would have done in the past. It shows me my Kev is still in there and that maybe, just maybe, he will be all better once that cranioplasty takes place. We only have a few hours a day where he is somewhat like he was a month or so ago - before the swelling again.
And before I go I just have to say - Jody - I will give MTV a call and see if Pimp My Ride would be willing to overhaul that new van, lol. I can just see it now - neon green and pink with some spinners and when we stop at a light it can bounce up and down with screamo music blaring out the sunroof. We can have a fur steering wheel cover and a horn that plays 16 different tunes, right? Yep - sounds like a plan, hehe. Maybe Jennifer from Ride-away (the wonderful woman and company that helps people like us find vehicles) can hook up with them and do this for all the guys. What do you think, Jennifer? LOL!
But seriously? That was just not fun. You just don't think about little things like half steps and doors that won't stay open while you enter. Just how do people do it that don't have help? How do people in a wheelchair open doors when they only have one arm that works and the door opens the opposite way? And how do you hold it open while wheeling past it if you only have one arm? I don't know - maybe I am just being dumb as I am still new to all of this. Maybe one night I'll be laying in bed and I'll hear that 'ding' that explains how it all works. Man, I sure hope so...
So when we left Subway (this has been a DAILY thing for over a month now. He even wanted it on Christmas Day!) I started heading home and I looked in the mirror and there was Kev already eating! He had unwrapped that sub and ate half of it while driving the three blocks to get home. I laughed so hard. And I just love it when he does things that he would have done in the past. It shows me my Kev is still in there and that maybe, just maybe, he will be all better once that cranioplasty takes place. We only have a few hours a day where he is somewhat like he was a month or so ago - before the swelling again.
And before I go I just have to say - Jody - I will give MTV a call and see if Pimp My Ride would be willing to overhaul that new van, lol. I can just see it now - neon green and pink with some spinners and when we stop at a light it can bounce up and down with screamo music blaring out the sunroof. We can have a fur steering wheel cover and a horn that plays 16 different tunes, right? Yep - sounds like a plan, hehe. Maybe Jennifer from Ride-away (the wonderful woman and company that helps people like us find vehicles) can hook up with them and do this for all the guys. What do you think, Jennifer? LOL!
Sunday, December 28, 2008
Day 210 - Dec 27, 2008
Not too much happened today. We couldn't even get Kevin to leave the hospital so we stayed in his room all day. He just wasn't feeling up to par today.
So there really isn't anything to say. I do want to answer a couple of questions that have come our way recently though.
First, Jessica you asked if we got the cards from your sister and the answer is yes. We also got another batch of cards and 2 big boxes of stockings that we passed around the ward. Everything was a hit! Thanks to all!!
Oh and all the baked goods - yum! I seriously think Kevin's whole life revolves around food, lol.
Holee - you asked if people can still send donations to the bank and the answer to that one is also yes. I actually prefer that because Paypal charges a fee on each transaction. I will try to put the bank's address on the blog over the next few days. As I mentioned - everything is going toward Kevin's house.
Ann - we miss you here in Tampa. I am glad Mark is doing well at home too. Come back soon!!
Ok - off to bed for me.
So there really isn't anything to say. I do want to answer a couple of questions that have come our way recently though.
First, Jessica you asked if we got the cards from your sister and the answer is yes. We also got another batch of cards and 2 big boxes of stockings that we passed around the ward. Everything was a hit! Thanks to all!!
Oh and all the baked goods - yum! I seriously think Kevin's whole life revolves around food, lol.
Holee - you asked if people can still send donations to the bank and the answer to that one is also yes. I actually prefer that because Paypal charges a fee on each transaction. I will try to put the bank's address on the blog over the next few days. As I mentioned - everything is going toward Kevin's house.
Ann - we miss you here in Tampa. I am glad Mark is doing well at home too. Come back soon!!
Ok - off to bed for me.
Friday, December 26, 2008
Day 209 - Dec 26, 2008
Yay! Kevin and I went on our first solo trip today. We were just going to run around the corner to DQ (for me) and Subway (for him) but instead we ordered Fettuccine Alfredo from Macaroni Grill and we drove about 5 miles or so to pick it up. Doesn't sound all that far away, does it? But let me tell ya - there is a traffic light nearly every block and it takes about 20-30 minutes to get there in rush hour traffic. We did fine though.
We had a real funny moment too. I had pulled over to call ahead and order and they always ask what you are driving because they bring it out to you and I said a bright blue minivan. Kevin started giving me the evil laugh - kinda like a "haha - you're driving a minivan" laugh and I whipped around in my seat and said "what the heck are you laughing at? You own it!!" Y'all shoulda seen the look on his face! It was priceless, lol. He had this look of mock horror and then we both just burst out laughing.
We did have fun though. Although - I am not sure how much longer I am going to be able to listen to heavy metal screamo music while driving, lol. But he starts screaming right along with it and his left arm is just dancing all over the place so I guess I will just grin and bear it. And please - somebody please - help me if I start liking that stuff...
So all in all - it was a pretty good day today. I am sad that Anthony is going home tomorrow though. He and Kevin get along really well and Anthony even went in the early shift this morning allowing both Breezy and I a sleep in. We have also had a lot of fun with him here.
But Tuesday my parents are coming for a week. That will be really nice...
We had a real funny moment too. I had pulled over to call ahead and order and they always ask what you are driving because they bring it out to you and I said a bright blue minivan. Kevin started giving me the evil laugh - kinda like a "haha - you're driving a minivan" laugh and I whipped around in my seat and said "what the heck are you laughing at? You own it!!" Y'all shoulda seen the look on his face! It was priceless, lol. He had this look of mock horror and then we both just burst out laughing.
We did have fun though. Although - I am not sure how much longer I am going to be able to listen to heavy metal screamo music while driving, lol. But he starts screaming right along with it and his left arm is just dancing all over the place so I guess I will just grin and bear it. And please - somebody please - help me if I start liking that stuff...
So all in all - it was a pretty good day today. I am sad that Anthony is going home tomorrow though. He and Kevin get along really well and Anthony even went in the early shift this morning allowing both Breezy and I a sleep in. We have also had a lot of fun with him here.
But Tuesday my parents are coming for a week. That will be really nice...
Thursday, December 25, 2008
Day 208 - Dec 25, 2008
I hope everyone had a great Christmas day! We did. We didn't really do much - which is always a good thing. The neurosurgeon actually came very early this morning so he was tapped before Breezy even got there. In one way that was great as he was raring to go early in the day. In another way that was bad because by the time dinner was ready, he was already lethargic and wouldn't even eat. He just slept at the table while we dined :-(
But we did really have a good day. We just lay around and watched movies and stuff. Kevin did at least eat leftover turkey for lunch and he ate a whole lot of it. He pretty much wiped us out of leftovers - even eating my portion, lol.
After he went to bed, Breezy, Anthony and I went to see a movie. I couldn't believe how packed the movies were here. I guess I am just used to small towns, lol.
And I guess tomorrow is a holiday so we get a whole long weekend of no therapies - yay! I am hoping to get Kevin into the van tomorrow and we can take a little spin. I guess we'll see...
But we did really have a good day. We just lay around and watched movies and stuff. Kevin did at least eat leftover turkey for lunch and he ate a whole lot of it. He pretty much wiped us out of leftovers - even eating my portion, lol.
After he went to bed, Breezy, Anthony and I went to see a movie. I couldn't believe how packed the movies were here. I guess I am just used to small towns, lol.
And I guess tomorrow is a holiday so we get a whole long weekend of no therapies - yay! I am hoping to get Kevin into the van tomorrow and we can take a little spin. I guess we'll see...
Wednesday, December 24, 2008
Day 207 - Dec 24, 2008
We celebrated Christmas today as Chrissy has to work tomorrow and couldn't be here. So I stuffed a turkey and we ate tons of food and unwrapped presents this evening and it was a really nice time. We had my sister and brother and mom and my other nephew on Skype so it was almost like they were here with us too.
It was even better because Kevin was actually in a good mood the whole time. They had just tapped his head and he is always good for a couple of hours afterward - until he starts filling up again.
So everyone was happy and it really did turn out to be a good day.
And on that note - I am going to bed. Merry Christmas, everyone!
It was even better because Kevin was actually in a good mood the whole time. They had just tapped his head and he is always good for a couple of hours afterward - until he starts filling up again.
So everyone was happy and it really did turn out to be a good day.
And on that note - I am going to bed. Merry Christmas, everyone!
Day 206 - Dec 23, 2008
I am pretty much going to skip writing tonight as I had to run to Wal-Mart and it was such a horrible experience.
Kevin was really the same today as he was yesterday - maybe a tiny bit better. We did tap close to 400 CCs of fluid today though and we also brought him down to the house for dinner, but he got very nauseous and we ended up taking him back up to the hospital right after we ate.
Hopefully he feels even better tomorrow.
Oh and before I forget - some of you have asked why the docs don't come earlier to tap him and it's because they are in surgery all day. I tried to get them to come earlier, but there's nothing they can do. I don't like it - but I do understand.
Kevin was really the same today as he was yesterday - maybe a tiny bit better. We did tap close to 400 CCs of fluid today though and we also brought him down to the house for dinner, but he got very nauseous and we ended up taking him back up to the hospital right after we ate.
Hopefully he feels even better tomorrow.
Oh and before I forget - some of you have asked why the docs don't come earlier to tap him and it's because they are in surgery all day. I tried to get them to come earlier, but there's nothing they can do. I don't like it - but I do understand.
Monday, December 22, 2008
Day 205 - Dec 22, 2008
From what I'm seeing, it looks like Kevin will be in a bad mood or just very withdrawn all day until his head is tapped. It's pretty much been like this all along, but it has been worse the last couple of days. I couldn't get him to eat or drink anything at all today until the doc came in and drew the fluid at about 5pm. Once that was done, he immediately wanted a sub and started drinking his Gatorade. Man - it's so hard to see him almost comatose throughout the day and then fine for a few hours in the evening. I sure hope that head plate gets here soon.
Other than that, nothing much happened. Kevin never got out of bed today and he actually was sound asleep by 7:30 (which never happens) so this evening Breezy, Anthony and I went to a Christmas lights show and then we did a little shopping. I am nearly done, only having to run back to Wal-Mart tomorrow night once Kevin is sleeping.
So, I think I will end here and go to bed a little bit early tonight. I know - it's still after 1am, but that's early for me, lol.
Other than that, nothing much happened. Kevin never got out of bed today and he actually was sound asleep by 7:30 (which never happens) so this evening Breezy, Anthony and I went to a Christmas lights show and then we did a little shopping. I am nearly done, only having to run back to Wal-Mart tomorrow night once Kevin is sleeping.
So, I think I will end here and go to bed a little bit early tonight. I know - it's still after 1am, but that's early for me, lol.
Sunday, December 21, 2008
Day 204 - Dec 21, 2008
We got a huge surprise today! My nephew, Anthony, walked into Kevin's room this afternoon! I couldn't believe it!! I wanted him to come down for Christmas, but no more help on plane tickets is being done due to the economy. But in he walked!! I guess he decided at 3:00 this morning that he was going to come anyway so he bought a ticket and flew down. He will be here until next weekend so that will be cool.
He didn't tell his sister Chrissy that he was coming either. So we loaded Kevin into the van and drove out to St Petersburg to The Pier and showed up at her work. Chrissy nearly flew into Anthony - almost toppling the whole display of china next to him. Man, that was close, lol. It was such a nice moment and even Kevin was grinning from ear to ear (one of the few times he smiled today).
And (of course) we stopped at The Cheesecake Factory on the way home and bought a whole cake. Kev was in a really rotten mood all day today and sad to say - that didn't even help. But - I'm sure it will tomorrow when we give him a piece, lol.
I also had a visitor today and that was my friend Traci and her family. They drove down from Georgia to go to Busch Gardens. It was so nice getting to meet her as we only know each other online from a business that I once started - scrapmuse.com She recently purchased the business and we used to talk often. Her husband, Mike, is being deployed during the first quarter of the year and it was really nice to have a man talk to Kevin. He so rarely gets that as the bulk of the nurses are female.
So back to Kev - I'm not sure why he was in such a bad mood, but it lasted all day. I am hoping he just woke up on the wrong side of the bed today. Hopefully tomorrow he feels better. Due to this though, nothing much happened. It was all I could do to get him to go with us to The Pier.
And back to the donation thing...Emily - you know how to work me, lol. It was that "he is a soldier and he is a hero...let us thank him for that!!" line that got me!! The only thing I ask is that everyone please understands that we are not asking for donations. If you want to help with the house - we would really appreciate it. Kevin wants it so bad and I also want to make him happy. But also know that we would never be offended if someone didn't want to or couldn't help. This whole thing isn't about the money - it's about Kev. That being said though, any donations can be sent via Paypal to lesliekamm@gmail.com.
Well, I need to get to get the little tree I bought decorated for Christmas. Goodnight everyone!
He didn't tell his sister Chrissy that he was coming either. So we loaded Kevin into the van and drove out to St Petersburg to The Pier and showed up at her work. Chrissy nearly flew into Anthony - almost toppling the whole display of china next to him. Man, that was close, lol. It was such a nice moment and even Kevin was grinning from ear to ear (one of the few times he smiled today).
And (of course) we stopped at The Cheesecake Factory on the way home and bought a whole cake. Kev was in a really rotten mood all day today and sad to say - that didn't even help. But - I'm sure it will tomorrow when we give him a piece, lol.
I also had a visitor today and that was my friend Traci and her family. They drove down from Georgia to go to Busch Gardens. It was so nice getting to meet her as we only know each other online from a business that I once started - scrapmuse.com She recently purchased the business and we used to talk often. Her husband, Mike, is being deployed during the first quarter of the year and it was really nice to have a man talk to Kevin. He so rarely gets that as the bulk of the nurses are female.
So back to Kev - I'm not sure why he was in such a bad mood, but it lasted all day. I am hoping he just woke up on the wrong side of the bed today. Hopefully tomorrow he feels better. Due to this though, nothing much happened. It was all I could do to get him to go with us to The Pier.
And back to the donation thing...Emily - you know how to work me, lol. It was that "he is a soldier and he is a hero...let us thank him for that!!" line that got me!! The only thing I ask is that everyone please understands that we are not asking for donations. If you want to help with the house - we would really appreciate it. Kevin wants it so bad and I also want to make him happy. But also know that we would never be offended if someone didn't want to or couldn't help. This whole thing isn't about the money - it's about Kev. That being said though, any donations can be sent via Paypal to lesliekamm@gmail.com.
Well, I need to get to get the little tree I bought decorated for Christmas. Goodnight everyone!
Saturday, December 20, 2008
Day 203 - Dec 20, 2008
Not too much happened today. We drained another 300 CCs of fluid late this afternoon and then we took a nap (it is so exhausting). It was kinda too late to do anything by the time we woke up, so we just came down to the house and ate dinner.
We are very time limited. We can't leave the hospital until his head is drained so if the neurosurgeon doesn't come until late, we can't go anywhere. That's what happened today. Hopefully he comes earlier tomorrow.
Moving on, some of you asked me to set up a Paypal account for donations toward the house and I am giving it some thought. It's one thing to accept from an organization and another from single people. This is probably one of the hardest things for me to accept - having to pretty much live on donations. But I do know we honestly could not be here if if weren't for everyone helping us out financially. So give me a couple days to work this all out in my head and we'll go from there.
We are very time limited. We can't leave the hospital until his head is drained so if the neurosurgeon doesn't come until late, we can't go anywhere. That's what happened today. Hopefully he comes earlier tomorrow.
Moving on, some of you asked me to set up a Paypal account for donations toward the house and I am giving it some thought. It's one thing to accept from an organization and another from single people. This is probably one of the hardest things for me to accept - having to pretty much live on donations. But I do know we honestly could not be here if if weren't for everyone helping us out financially. So give me a couple days to work this all out in my head and we'll go from there.
Friday, December 19, 2008
Day 202 - Dec 19, 2008
Today was another decent day. We tapped nearly 300 CCs of fluid today and it seems the more, the better. We also took a little jaunt to the video store and to Subway.
I will try to take pics of the van tomorrow. It is equipped with a lift and both front seats can be removed if necessary. This way, if Kev gets to the point where he can drive, we can remove the driver's seat and he can wheel right up to it. I do agree with whomever about the space in a van - it will come in handy when we drive back and forth from FL to PA (but I still don't like it, lol).
We also got the model of Kevin's plate (skull) today. I didn't have my camera with me at the time because I had just left the hospital and had to run back up there to give my stamp of approval on it so I don't have a picture to show you, but it is really neat. They basically just use a firm gel/waxy type substance and create Kevin's head with it. They leave out the part where he has no skull and they build a separate piece to fill in where it should go, thus creating the plate shape. From there, once it's okayed, they create the 'real' thing. Hopefully, we will get it in a week and then it needs to be sterilized for 48 hours before being placed in Kevin's head.
I have been told that although it sounds like an intense surgery, it's really not. It will only take about 3-4 hours and that's it. I can't wait because I so want it to fix the problem. And I think Kevin will feel better about himself once his head is shaped right.
Please, please let this work out...
I will try to take pics of the van tomorrow. It is equipped with a lift and both front seats can be removed if necessary. This way, if Kev gets to the point where he can drive, we can remove the driver's seat and he can wheel right up to it. I do agree with whomever about the space in a van - it will come in handy when we drive back and forth from FL to PA (but I still don't like it, lol).
We also got the model of Kevin's plate (skull) today. I didn't have my camera with me at the time because I had just left the hospital and had to run back up there to give my stamp of approval on it so I don't have a picture to show you, but it is really neat. They basically just use a firm gel/waxy type substance and create Kevin's head with it. They leave out the part where he has no skull and they build a separate piece to fill in where it should go, thus creating the plate shape. From there, once it's okayed, they create the 'real' thing. Hopefully, we will get it in a week and then it needs to be sterilized for 48 hours before being placed in Kevin's head.
I have been told that although it sounds like an intense surgery, it's really not. It will only take about 3-4 hours and that's it. I can't wait because I so want it to fix the problem. And I think Kevin will feel better about himself once his head is shaped right.
Please, please let this work out...
Thursday, December 18, 2008
Day 201 - Dec 18, 2008
We got our van today. Yay (hehe). You should've seen the look on Kevin's face when I told him he was the proud owner of a new minivan, lol. Suffice it to say, I believe he feels about them exactly as I do.
BUT - it was really nice to get Kevin out of bed for the first time in a week and a half and load him up into the car and drive around for an hour or so. We even stopped for chinese takeout and Kevin wanted to get out of the car and go into the restaurant. I am pleased to say that he didn't even feel the need to go to the bathroom while we were in there (but there were only about 4 people in there which makes a huge difference). I am hoping to take him out at least 4 or 5 times a week for small trips like that. I really do think that the more we go out in public, the easier it will get (for both of us).
I was kinda surprised that we were allowed to take Kev out and do this tonight, but the docs assured me that it's no different than it has been for the last how many months. After thinking about it, I suppose they are right. His head has been large since the beginning so if he feels up to going - we are gonna do it!
Other than that, Kev did have a much better day today. He was pretty much awake the bulk of the day and he was in a better mood too. He did have his therapies and I was glad to see him tolerating the chair for hours again. I was worried that we lost all that we had gained recently. He hasn't went down to the gym and walked again yet, but I'm sure he will next week.
Well, off to bed for me...
BUT - it was really nice to get Kevin out of bed for the first time in a week and a half and load him up into the car and drive around for an hour or so. We even stopped for chinese takeout and Kevin wanted to get out of the car and go into the restaurant. I am pleased to say that he didn't even feel the need to go to the bathroom while we were in there (but there were only about 4 people in there which makes a huge difference). I am hoping to take him out at least 4 or 5 times a week for small trips like that. I really do think that the more we go out in public, the easier it will get (for both of us).
I was kinda surprised that we were allowed to take Kev out and do this tonight, but the docs assured me that it's no different than it has been for the last how many months. After thinking about it, I suppose they are right. His head has been large since the beginning so if he feels up to going - we are gonna do it!
Other than that, Kev did have a much better day today. He was pretty much awake the bulk of the day and he was in a better mood too. He did have his therapies and I was glad to see him tolerating the chair for hours again. I was worried that we lost all that we had gained recently. He hasn't went down to the gym and walked again yet, but I'm sure he will next week.
Well, off to bed for me...
Day 200 - Dec 17, 2008
200 days! Sounds like a lifetime, feels even longer.
Breezy and I had to move my room at the Fisher House across the hallway tonight to another room after Kevin went to sleep. We had a room with a connecting door and a family that needed two rooms could have benefit more from it than me, so we made the move.
I am a little of kilter because although it's the same room, everything is flipped. Some of my OCD is showing because I feel strange with everything backward, lol.
Oh well, everything is moved - now we just have to organize it all.
So moving on to Kevin, he seemed to do a bit better today. He finally got a shower - the first in 9 days and I am thinking that may have helped. He ate somewhat decently today too so that always helps.
Today was the first day that he didn't scream while having his head tapped too. Whew! That was real nice.
The docs were also told that the model of his head is on its way. They have to approve the size and shape and then the 'real' head plate is made. I guess his surgery won't be until after the holidays now though. That upsets me because each day we are introducing more and more possible chances of infection when we tap him. If he gets one (an infection), he can't have the flap (plate) put into his head for another 6 months.
Kevin also went for a CT Angio today. His heart rate was elevated yesterday and they wanted to make sure all was well with it. I am thinking it might have been the new pain patch they put him on. They had just changed it and he became severely restless and agitated. Maybe with his head the way it is it's causing a different reaction than normal. Not sure. I am keeping an eye on it though. Luckily - everything came back fine with his heart. YAY!
Well, off to bed for me. Steve - I think it was you that called while we were tapping Kevin's head. I will try to call you tomorrow.
I also contacted Building Homes for Heroes. The people that I talked to were so nice. Keeping our fingers crossed that they can help us out.
Breezy and I had to move my room at the Fisher House across the hallway tonight to another room after Kevin went to sleep. We had a room with a connecting door and a family that needed two rooms could have benefit more from it than me, so we made the move.
I am a little of kilter because although it's the same room, everything is flipped. Some of my OCD is showing because I feel strange with everything backward, lol.
Oh well, everything is moved - now we just have to organize it all.
So moving on to Kevin, he seemed to do a bit better today. He finally got a shower - the first in 9 days and I am thinking that may have helped. He ate somewhat decently today too so that always helps.
Today was the first day that he didn't scream while having his head tapped too. Whew! That was real nice.
The docs were also told that the model of his head is on its way. They have to approve the size and shape and then the 'real' head plate is made. I guess his surgery won't be until after the holidays now though. That upsets me because each day we are introducing more and more possible chances of infection when we tap him. If he gets one (an infection), he can't have the flap (plate) put into his head for another 6 months.
Kevin also went for a CT Angio today. His heart rate was elevated yesterday and they wanted to make sure all was well with it. I am thinking it might have been the new pain patch they put him on. They had just changed it and he became severely restless and agitated. Maybe with his head the way it is it's causing a different reaction than normal. Not sure. I am keeping an eye on it though. Luckily - everything came back fine with his heart. YAY!
Well, off to bed for me. Steve - I think it was you that called while we were tapping Kevin's head. I will try to call you tomorrow.
I also contacted Building Homes for Heroes. The people that I talked to were so nice. Keeping our fingers crossed that they can help us out.
Tuesday, December 16, 2008
Day 199 - Dec 16, 2008
Kevin had a good afternoon today once they drained 240 CCs of fluid from his head. Up until then he slept all day, but afterward he was pretty good. He hasn't been in his chair or out of bed in any way in ten days though, but hopefully tomorrow.
I am not really going to write much today as I am just beat. I do want to throw another "THANK YOU" out to everyone that has been sending us gifts and donations. We have gotten some beautiful Christmas cards and tree decorations - some even homemade and hand carved - and a real pine wreath and some blankets and the quilts that Holee and her gang made for us made it down to us this week too. Everything is so beautiful!
And I really chuckle when I find Subway gift cards and Cheesecake Factory cards and even some McDonalds cards. Kevin's face always lights up - which is so funny to watch.
And I want to add that all donations are now being put into the 'let's buy Kevin a home' fund. I am hoping that we will be able to find an organization or two to help us out with some of the cost of the home and I did apply to Homes For Our Troops in the hopes that they can handle all of the adaptations. I do realize that it's a buyer's market right now, but homes are still very pricey in this area. I just don't want Kevin to have a huge mortgage payment so I am hoping this all works out for us. And it's sad to say, but once he checks out of the hospital, my income is done. So I will not be able to have any type of a paying job because I won't be able to leave him, but need to somehow figure out how to pay my own bills. Fun! Fun! Fun!
Oh well, I guess I'll cross that bridge when I get to it...
I am not really going to write much today as I am just beat. I do want to throw another "THANK YOU" out to everyone that has been sending us gifts and donations. We have gotten some beautiful Christmas cards and tree decorations - some even homemade and hand carved - and a real pine wreath and some blankets and the quilts that Holee and her gang made for us made it down to us this week too. Everything is so beautiful!
And I really chuckle when I find Subway gift cards and Cheesecake Factory cards and even some McDonalds cards. Kevin's face always lights up - which is so funny to watch.
And I want to add that all donations are now being put into the 'let's buy Kevin a home' fund. I am hoping that we will be able to find an organization or two to help us out with some of the cost of the home and I did apply to Homes For Our Troops in the hopes that they can handle all of the adaptations. I do realize that it's a buyer's market right now, but homes are still very pricey in this area. I just don't want Kevin to have a huge mortgage payment so I am hoping this all works out for us. And it's sad to say, but once he checks out of the hospital, my income is done. So I will not be able to have any type of a paying job because I won't be able to leave him, but need to somehow figure out how to pay my own bills. Fun! Fun! Fun!
Oh well, I guess I'll cross that bridge when I get to it...
Monday, December 15, 2008
Day 198 - Dec 15, 2008
Before I really get rolling on this post, I want to point out that I was in no way angry at anyone for voicing their opinions to me the other night. I also don't want anyone singled out as lecturing me or anything because I honestly do believe that everyone has our own best interest at heart, it's just that people THINK we should be cracking up and when we get mouthy they assume it's finally happening.
But anyway, Kevin pretty much slept all day today as his head is even larger. The neurosurgeons can't seem to get all the fluid to come out of the shunt so more and more is being left behind to swell his head. I mentioned a compression wrap of sorts to be worn around his head and the doctor shunned the idea the other day, but I guess they are going to apply one tomorrow after all. Maybe I missed my calling, huh? NOT!
I did meet with the realtor today and we put a bid in on the house that Kev fell in love with. It's very expensive (to this Western PA girl) and I can't go much higher than what we bid so hopefully the bank will consider it. We talk about this house every day while Kevin's head is being tapped so I really hope it works out. This is the only topic I can use to get Kevin to focus on something other than the pain for a minute or so every now and again.
You guys just can't imagine what it's like to hold him while they drain him. First, they stick the needle into his head (with no pain killers of any kind) and then they suck the fluid out. It has been taking about 45 minutes each day and believe me - he screams and sobs and it is horrible. And the whole time I have to hold his head up off the bed to keep it sterile and tell him to focus on me and listen to me softly talk about the house or anything I can think of. It is one of the top ten hardest things I have ever had to do so far.
Anyway, I did tell you guys that I was going to go over some of the things that have been going on here, but it's going to have to wait. I am just too tired to think of all the bad things tonight. I will try tomorrow, but there are no guarantees.
I do want to say one thing though - a few of you have mentioned that you didn't think it was a good idea for us to go home due to the 'what ifs'. I am not sure what you think is right? Do you want us to stay in the hospital for the rest of his life? I mean, there are what ifs every single day. FOR ALL OF US!!! I can tell you that we will not live in fear of all of life's bad possibilities - if we do we will miss all of the good ones. I am not saying we are just going to cruise through life without a care in the world, I am just saying that I can't worry about having to hit the brakes or if I should fall down the stairs or anything that can happen to any one of us. This is not going to be too much different than taking home a newborn baby - remember how we all worried about all of those things? But did it stop us from living our lives? Nope.
As for the possibility that we will have future problems with his head/shunt? That's pretty much a guarantee. Forever. It's something that I am already aware of and that I have accepted. It doesn't make it easy, but it's just the way it is. And who knows...maybe we will be lucky and he won't really need the shunt to work after his cranioplasty...but then again - we may need it for the next 50 years too. And in that case - it will be replaced numerous times and I will just have to be on top of my game every single minute of every single day.
No problem, right?
But anyway, Kevin pretty much slept all day today as his head is even larger. The neurosurgeons can't seem to get all the fluid to come out of the shunt so more and more is being left behind to swell his head. I mentioned a compression wrap of sorts to be worn around his head and the doctor shunned the idea the other day, but I guess they are going to apply one tomorrow after all. Maybe I missed my calling, huh? NOT!
I did meet with the realtor today and we put a bid in on the house that Kev fell in love with. It's very expensive (to this Western PA girl) and I can't go much higher than what we bid so hopefully the bank will consider it. We talk about this house every day while Kevin's head is being tapped so I really hope it works out. This is the only topic I can use to get Kevin to focus on something other than the pain for a minute or so every now and again.
You guys just can't imagine what it's like to hold him while they drain him. First, they stick the needle into his head (with no pain killers of any kind) and then they suck the fluid out. It has been taking about 45 minutes each day and believe me - he screams and sobs and it is horrible. And the whole time I have to hold his head up off the bed to keep it sterile and tell him to focus on me and listen to me softly talk about the house or anything I can think of. It is one of the top ten hardest things I have ever had to do so far.
Anyway, I did tell you guys that I was going to go over some of the things that have been going on here, but it's going to have to wait. I am just too tired to think of all the bad things tonight. I will try tomorrow, but there are no guarantees.
I do want to say one thing though - a few of you have mentioned that you didn't think it was a good idea for us to go home due to the 'what ifs'. I am not sure what you think is right? Do you want us to stay in the hospital for the rest of his life? I mean, there are what ifs every single day. FOR ALL OF US!!! I can tell you that we will not live in fear of all of life's bad possibilities - if we do we will miss all of the good ones. I am not saying we are just going to cruise through life without a care in the world, I am just saying that I can't worry about having to hit the brakes or if I should fall down the stairs or anything that can happen to any one of us. This is not going to be too much different than taking home a newborn baby - remember how we all worried about all of those things? But did it stop us from living our lives? Nope.
As for the possibility that we will have future problems with his head/shunt? That's pretty much a guarantee. Forever. It's something that I am already aware of and that I have accepted. It doesn't make it easy, but it's just the way it is. And who knows...maybe we will be lucky and he won't really need the shunt to work after his cranioplasty...but then again - we may need it for the next 50 years too. And in that case - it will be replaced numerous times and I will just have to be on top of my game every single minute of every single day.
No problem, right?
Sunday, December 14, 2008
Day 197 - Dec 14, 2008
I really don't know what to say other than a lot of you have jumped to conclusions based on only what I want y'all to hear.
I will be the first one to tell you that I need a break. But unfortunately, it's just not gonna happen any time soon - if ever. The sad thing is that some of you think that is why I am screaming my head off here. So not true.
Although when we first got here I thought this hospital was awesome, every one of the family members here have seen a definite decrease in the quality of care. I am in no way saying that all the nurses and all of the doctors stink, because there really are some awesome ones here, but I will say that everyone here is overtaxed and stretched too thin. There are not enough therapists, nurses and doctors to cover the caseload and sadly, they just keep adding patients to the wing. And in the last week alone, 2 patients have left and went back to Walter Reed and one is leaving next week for Dallas because of the lack of care here. It's not just me feeling like I do. Believe me!
Now I can see this clearly, so I step in and take TOTAL care of Kevin. The only thing I do not do is shower him. I do help bed-bath him on the opposite days (not enough staff to shower the patients every day even), but I have yet to go into the shower with him. I do all of his creams, all of his garments, get him ready for all of his therapies and participate in everything. I am handed his pills and I make him take them. One day, I even had to take him to X-ray myself because five nurses stood over his bed and fought over who was going to take him. Nothing like making a patient feel like a pain in the ass, right?
So pointing all of that out - there honestly won't be much difference when we go home. And the doctors do agree with me. They see that Kevin doesn't require the care that most of the patients here do. They see that everything he has achieved has been because Breezy or I push him to do it. They see that if anyone knows when to stop - it's also us. We understand him better than anyone here and when we take him to the Fisher House on the weekends, we basically do live there. He doesn't get to sleep there, but he honestly could and it would not make a difference to us.
That being said, I am gathering that some of you think I am checking him out of the hospital the day after surgery. I am shaking my head in wonder that y'all don't know me enough by now to know that I would not risk my son. Not even to have an address. I will tell you that I was told yesterday that I can safely take him home two weeks after this surgery - but I will not be doing that. I am anticipating another 3 months or so here. We still have one more surgery on his eyes and then ONCE HE IS ALL CLEAR - we will go home.
Now I am going to tell y'all a story to show each of you exactly what I mean when I say you only hear what I want you to hear. This should make y'all stop and think before believing that you have the inside track to my thoughts.
Back when we were in Texas, the first time that Breezy went home for a while, I was very stressed. More than one of you assumed it was because Breezy wasn't there to help. The truth of the matter was that over a long holiday weekend (if you guys remember this) Kevin was able to somehow pull his feeding tube, head bandages and his trach out. Now Kevin was still barely out of his coma, so it took him some time to do all of these things - especially as he had no hand coordination. Sadly, when I went in to see him the night before, he was left unattended and was picking one of his grafts off. I mentioned it very nicely to the nurse that he needed to have his arm restrained a little better. She was very rude about it basically telling me she knew how to do her job. I saw all of this from the anteroom. So when I got in the room and walked up to his bed, the pad under him was COVERED in blood. He had scratched his back raw. This was all donor and graft site and the grafts did need to be redone.
I knew when I went home that night that something was going to happen to Kevin and sure enough it did. He was able to pull three very important things out of his body.
Well, I stewed about it all the next day, but back then I still didn't voice things too loudly. But I really was upset so while at dinner I called and complained to the charge nurse. It turns out that the nurse who neglected my son was the charge nurse. I still told her that I was upset even though I was shaking with fear at having to do it. But my son was at risk and I didn't want her near him again.
Well, it really got worse. The next morning, we apparently got a close friend of hers as our nurse. From the moment I walked into that anteroom she was on my butt. She started lecturing me about how I am nobody and they are trained nurses that know more than I ever will. She then went into Kevin's room and showed me how tight she could tie him and didn't allow us to untie him even while we visited. She worked either 8 or 12 hour shifts and never once untied him the whole time - and let me tell you, his arm was tight against the rail!! FOR THREE DAYS!!! (btw, this is against the law) She also threatened to evict me from the room because Kevin was agitated and it had to be my fault. I can't begin to tell you of the horrors that she did to us during that three days. These are a few of the major things, but it was all weekend long.
During that time - no one would listen to me. Everyone was friends and they all stuck together.
Lucky for me, Maritza knew what was going on and called a friend of hers that was a colonel. The colonel listened, talked to the first nurse (the charge nurse) and saw immediately what her attitude was like and then investigated the other nurse that did so many wrong things to Kevin because she was mad at me. That nurse did end up being fired.
So did I tell you guys about this? NO. Why? Because I don't like to complain. I try to always be upbeat no matter what life throws at me. But sometimes, when things just keep getting worse and worse - I vent.
So maybe the next time - instead of thinking "Wow! She's cracking up!" - think, hmmm...there must be something going on that she just isn't sharing with us. (although I will say that a good crack up could be good for me, lol)
Now because this post is so incredibly long already, I will explain some of what has been going on here at this hospital tomorrow night. I want to go home and see Moe and Mathew as they leave in the morning.
As for Kevin - his head is still very large. He is doing better because I believe he is adjusting to the pressure. But he is eating food anyway and drinking too. He's tough so hopefully he can keep going like this until his surgery happens in a week or so.
I will be the first one to tell you that I need a break. But unfortunately, it's just not gonna happen any time soon - if ever. The sad thing is that some of you think that is why I am screaming my head off here. So not true.
Although when we first got here I thought this hospital was awesome, every one of the family members here have seen a definite decrease in the quality of care. I am in no way saying that all the nurses and all of the doctors stink, because there really are some awesome ones here, but I will say that everyone here is overtaxed and stretched too thin. There are not enough therapists, nurses and doctors to cover the caseload and sadly, they just keep adding patients to the wing. And in the last week alone, 2 patients have left and went back to Walter Reed and one is leaving next week for Dallas because of the lack of care here. It's not just me feeling like I do. Believe me!
Now I can see this clearly, so I step in and take TOTAL care of Kevin. The only thing I do not do is shower him. I do help bed-bath him on the opposite days (not enough staff to shower the patients every day even), but I have yet to go into the shower with him. I do all of his creams, all of his garments, get him ready for all of his therapies and participate in everything. I am handed his pills and I make him take them. One day, I even had to take him to X-ray myself because five nurses stood over his bed and fought over who was going to take him. Nothing like making a patient feel like a pain in the ass, right?
So pointing all of that out - there honestly won't be much difference when we go home. And the doctors do agree with me. They see that Kevin doesn't require the care that most of the patients here do. They see that everything he has achieved has been because Breezy or I push him to do it. They see that if anyone knows when to stop - it's also us. We understand him better than anyone here and when we take him to the Fisher House on the weekends, we basically do live there. He doesn't get to sleep there, but he honestly could and it would not make a difference to us.
That being said, I am gathering that some of you think I am checking him out of the hospital the day after surgery. I am shaking my head in wonder that y'all don't know me enough by now to know that I would not risk my son. Not even to have an address. I will tell you that I was told yesterday that I can safely take him home two weeks after this surgery - but I will not be doing that. I am anticipating another 3 months or so here. We still have one more surgery on his eyes and then ONCE HE IS ALL CLEAR - we will go home.
Now I am going to tell y'all a story to show each of you exactly what I mean when I say you only hear what I want you to hear. This should make y'all stop and think before believing that you have the inside track to my thoughts.
Back when we were in Texas, the first time that Breezy went home for a while, I was very stressed. More than one of you assumed it was because Breezy wasn't there to help. The truth of the matter was that over a long holiday weekend (if you guys remember this) Kevin was able to somehow pull his feeding tube, head bandages and his trach out. Now Kevin was still barely out of his coma, so it took him some time to do all of these things - especially as he had no hand coordination. Sadly, when I went in to see him the night before, he was left unattended and was picking one of his grafts off. I mentioned it very nicely to the nurse that he needed to have his arm restrained a little better. She was very rude about it basically telling me she knew how to do her job. I saw all of this from the anteroom. So when I got in the room and walked up to his bed, the pad under him was COVERED in blood. He had scratched his back raw. This was all donor and graft site and the grafts did need to be redone.
I knew when I went home that night that something was going to happen to Kevin and sure enough it did. He was able to pull three very important things out of his body.
Well, I stewed about it all the next day, but back then I still didn't voice things too loudly. But I really was upset so while at dinner I called and complained to the charge nurse. It turns out that the nurse who neglected my son was the charge nurse. I still told her that I was upset even though I was shaking with fear at having to do it. But my son was at risk and I didn't want her near him again.
Well, it really got worse. The next morning, we apparently got a close friend of hers as our nurse. From the moment I walked into that anteroom she was on my butt. She started lecturing me about how I am nobody and they are trained nurses that know more than I ever will. She then went into Kevin's room and showed me how tight she could tie him and didn't allow us to untie him even while we visited. She worked either 8 or 12 hour shifts and never once untied him the whole time - and let me tell you, his arm was tight against the rail!! FOR THREE DAYS!!! (btw, this is against the law) She also threatened to evict me from the room because Kevin was agitated and it had to be my fault. I can't begin to tell you of the horrors that she did to us during that three days. These are a few of the major things, but it was all weekend long.
During that time - no one would listen to me. Everyone was friends and they all stuck together.
Lucky for me, Maritza knew what was going on and called a friend of hers that was a colonel. The colonel listened, talked to the first nurse (the charge nurse) and saw immediately what her attitude was like and then investigated the other nurse that did so many wrong things to Kevin because she was mad at me. That nurse did end up being fired.
So did I tell you guys about this? NO. Why? Because I don't like to complain. I try to always be upbeat no matter what life throws at me. But sometimes, when things just keep getting worse and worse - I vent.
So maybe the next time - instead of thinking "Wow! She's cracking up!" - think, hmmm...there must be something going on that she just isn't sharing with us. (although I will say that a good crack up could be good for me, lol)
Now because this post is so incredibly long already, I will explain some of what has been going on here at this hospital tomorrow night. I want to go home and see Moe and Mathew as they leave in the morning.
As for Kevin - his head is still very large. He is doing better because I believe he is adjusting to the pressure. But he is eating food anyway and drinking too. He's tough so hopefully he can keep going like this until his surgery happens in a week or so.
Saturday, December 13, 2008
Day 196 - Dec 13, 2008
I just don't even know where to begin. First, I was very angry that the docs just left Kevin laying in bed for 4 days while not really even bothering to worry. He didn't eat one bit of food, had nothing to drink either and his head was huge. To be honest, he wasn't even taking any of his meds. I am not sure why they didn't just change his meds to IV form, but they didn't.
So anyway, Kevin was showing signs of a constant severe migraine. He couldn't tolerate any light or sounds. This was fine because we were in a room with no roommate and I was able to keep nearly everyone out. BUT - for some reason they chose Friday to put someone else in the room with us. And to top it all off = the guy is very aggressive and screams all the time and is somewhat violent. In the meantime, they decided to take Kevin down to ICU because he was so lethargic and couldn't tolerate anything. Makes sense right? I mean we go from a controlled room where I can keep it quiet and dark to ICU where it's super bright and VERY loud. But then - there's the roommate. HA!
I went nuts! I mean, seriously? Do they not even get a feel for what these patients are like before they put them in a room with someone else? This guy is so bad that he went in to Joel's room twice. Now Joel is blind. He is very vulnerable and this guy was able to walk into his room twice? How are we supposed to feel safe here? And sad to say, but it took 4 nurses to get the guy out of there the one time. How scary is that that he is supposed to be Kevin's roommate? No flippin way, I say!
And then, we get down to ICU and they are upset because he really doesn't need to be there. He is taking up a valuable bed that can be used for someone that needs it. So they are mad that we are there. I am mad that we are there. And the chief of the hospital comes in and tells me basically - tough shit. Y'all can imagine that that didn't go over too well with me. I did tell him that he is a fucking moron and I stand by my words. He doesn't know Kevin from Adam so who is he to say what Kevin needs? It was obvious he just has the ego from hell and is on a power kick. I told him that my son is an active duty soldier and he deserves respect and he just isn't getting it from this hospital. I told him I think I made a mistake. He said 'Why? Because you are in ICU?" and I said "NO! Because we are in Tampa!" He proceeded to tell me that his staff is excellent and I said "yeah, that's why your neurosurgeons changed the process for dealing with Kevin's head and forgot to put the orders in so that no one but me knew about it? And then they went home? And of course, we have nurses that don't put the correct flow rate on the IVs and leave Kev to eat by himself and missing or incorrect meds all the time that no one but me realizes and I just went on and on.
I am so mad. But you know what? We are stuck here. Kevin cannot be transported as he is right now. And frankly - will he be any better anywhere else? I doubt it. I just wish there was some magical place that can take care of Kevin without any hassles.
This is why though I cannot leave the hospital. I have been here since Tuesday morning and have only left to get two showers and I slept the one night at home while Breezy stayed. I have had to become the nurse and each of Kevin's specialists (ie neurosurgery, dietary, psychologist, you name it). I have to babysit every department because they don't finish their job all the way to the end.
And it really sucks that Moe is here and I can't even visit with her. I haven't seen her in six months and it's just not fair. I did get Kevin into a private room that is so small we can only really have one person in the room with him. And because we were still in ICU most of today, I sent Moe, Breezy and Mathew (Moe's son) to Disney World. We were able to get free tickets and I figured it would be fun for them as I can't leave the hospital.
This all just sucks.
One good thing though - they are pushing Kev's cranioplasty to less than two weeks now. I will have Kevin out of this hospital as fast as he can get better after the surgery. I feel we will be better off and safer in our own home (assuming we have a home and that's one big ass assumption).
Well, I am exhausted and going to curl up in my chair. I do want to say that the chair does pull out into a bed of sorts, but my upper body isn't heavy enough to keep it that way. I just get all comfortable and bam - I am folded back up into a chair. It's ok though. It may not be the most comfortable of places, but I can handle it.
So anyway, Kevin was showing signs of a constant severe migraine. He couldn't tolerate any light or sounds. This was fine because we were in a room with no roommate and I was able to keep nearly everyone out. BUT - for some reason they chose Friday to put someone else in the room with us. And to top it all off = the guy is very aggressive and screams all the time and is somewhat violent. In the meantime, they decided to take Kevin down to ICU because he was so lethargic and couldn't tolerate anything. Makes sense right? I mean we go from a controlled room where I can keep it quiet and dark to ICU where it's super bright and VERY loud. But then - there's the roommate. HA!
I went nuts! I mean, seriously? Do they not even get a feel for what these patients are like before they put them in a room with someone else? This guy is so bad that he went in to Joel's room twice. Now Joel is blind. He is very vulnerable and this guy was able to walk into his room twice? How are we supposed to feel safe here? And sad to say, but it took 4 nurses to get the guy out of there the one time. How scary is that that he is supposed to be Kevin's roommate? No flippin way, I say!
And then, we get down to ICU and they are upset because he really doesn't need to be there. He is taking up a valuable bed that can be used for someone that needs it. So they are mad that we are there. I am mad that we are there. And the chief of the hospital comes in and tells me basically - tough shit. Y'all can imagine that that didn't go over too well with me. I did tell him that he is a fucking moron and I stand by my words. He doesn't know Kevin from Adam so who is he to say what Kevin needs? It was obvious he just has the ego from hell and is on a power kick. I told him that my son is an active duty soldier and he deserves respect and he just isn't getting it from this hospital. I told him I think I made a mistake. He said 'Why? Because you are in ICU?" and I said "NO! Because we are in Tampa!" He proceeded to tell me that his staff is excellent and I said "yeah, that's why your neurosurgeons changed the process for dealing with Kevin's head and forgot to put the orders in so that no one but me knew about it? And then they went home? And of course, we have nurses that don't put the correct flow rate on the IVs and leave Kev to eat by himself and missing or incorrect meds all the time that no one but me realizes and I just went on and on.
I am so mad. But you know what? We are stuck here. Kevin cannot be transported as he is right now. And frankly - will he be any better anywhere else? I doubt it. I just wish there was some magical place that can take care of Kevin without any hassles.
This is why though I cannot leave the hospital. I have been here since Tuesday morning and have only left to get two showers and I slept the one night at home while Breezy stayed. I have had to become the nurse and each of Kevin's specialists (ie neurosurgery, dietary, psychologist, you name it). I have to babysit every department because they don't finish their job all the way to the end.
And it really sucks that Moe is here and I can't even visit with her. I haven't seen her in six months and it's just not fair. I did get Kevin into a private room that is so small we can only really have one person in the room with him. And because we were still in ICU most of today, I sent Moe, Breezy and Mathew (Moe's son) to Disney World. We were able to get free tickets and I figured it would be fun for them as I can't leave the hospital.
This all just sucks.
One good thing though - they are pushing Kev's cranioplasty to less than two weeks now. I will have Kevin out of this hospital as fast as he can get better after the surgery. I feel we will be better off and safer in our own home (assuming we have a home and that's one big ass assumption).
Well, I am exhausted and going to curl up in my chair. I do want to say that the chair does pull out into a bed of sorts, but my upper body isn't heavy enough to keep it that way. I just get all comfortable and bam - I am folded back up into a chair. It's ok though. It may not be the most comfortable of places, but I can handle it.
Friday, December 12, 2008
Day 195 - Dec 12, 2008
I am not going to be able to write anything tonight. Kevin is back in ICU and there is no internet in that room. I left Breezy and Mathew with Kevin while Moe and I went to dinner real quick and then I am heading back to spend the night with him. (obviously Moe is here to visit - yay!!)
Suffice it to say, I have been on the rampage all day. I have told everyone and their mother off. I even called the chief of staff of the whole hospital a fucking moron to his face. And he is. I am tired of Kevin being mistreated and ignored during a serious crisis. The buck stops here!!
So, hopefully I will have a chance to catch everyone up on everything tomorrow. You are all going to have to excuse my french, but this weekend it's gonna fly!
Suffice it to say, I have been on the rampage all day. I have told everyone and their mother off. I even called the chief of staff of the whole hospital a fucking moron to his face. And he is. I am tired of Kevin being mistreated and ignored during a serious crisis. The buck stops here!!
So, hopefully I will have a chance to catch everyone up on everything tomorrow. You are all going to have to excuse my french, but this weekend it's gonna fly!
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