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.

21 comments:

Anonymous said...

If you haven't already, go to the patient advocate's office. It's on the second floor (main hospital building) in the hallway between the Credit Union ATM and OT. Get them involved. It also might be time to call your congressional rep.

Holee said...

I can't help thinking you might want to re think this a little. Kevin may not be well enough to be taken home, especially after the surgery. What will happen if his head starts to swell or he gets into severe pain. It might be a constant emergency and rush back to the hospital.

I am sure you want out of that hospital, but sometimes going home isn't the best solution for the patient. You couldn't put him on an IV at home without a doctor ordering it and they don't make house calls.

I worry about you rushing things. I worry about you taking him in a van. What if you had to jam on the brakes? Or someone could run into the rear of the van. Until he has the plate in his head, the doctors might be right. That kind of jolt could be a disaster for Kevin.

I think your falling apart and need to get away from the hospital for a few days, just visit for an hour or two and have Moe or Tracy or Breezy take over. Things always look different when you are rested.

Everything seems to have become a mountain and that should signal you to take a break. A house is not important. You can always get an apartment temporarily to see how he does out of the hospital.In fact, a house might just become another problem if Kevin doesn't do well at home.

I'm not saying this to be mean or nasty. I'm watching a strong person fall apart after months of constant care of her son.

Although it's good for you to get rid of the stress, as long as Kevin needs the doctors, try to remember that sugar is liked more then vinegar. You don't want his caretakers to avoid coming in his room because they are afraid of what will be said to them.

LISA said...

Leslie,

You need help and you need it NOW !!!!

I would never leave Kevin alone there..especially after talking with the person you stated obviously is on an ego trip.

I'm glad he was informed of issues that show his hospital isn't as great as he thinks it is.

I am sure you are keeping a notebook..with times, dates, issues and names.

Please know, I feel that after your last post, you will get all kinds of people wanting to help. I just hope you get the results that you are looking for.

More important than anything...is that Kevin stays safe and gets the treatment he so desperately needs.

Please know you have many, many prayers coming your way.

God Bless you...

Adrenalin and anger together are sometimes a very good combination...

I understand that people can walk all over us...but when someone hurts or something happens to one of our babies....the Mama bear's claws go out. LOOK OUT when that happens. No one hurts our babies !!!

STAY STRONG...

LISA said...

Leslie,

I was typing as Holee's comment was being posted and did not see it until mine was posted.

Kevin does need to be at the hospital. He still needs lots of treatment and procedures there.

It must be very difficult as to know what to do next. You are very much doing the right thing to make sure he is never there alone.

You most definitely need more help than you have.

So much thought, I feel, is going into each post you will read.

I think we feel so helpless in not being able to help you and so feel the need to reach out and take all of this pain away from all of you...but we can't.

Please ask for help..for second opinions..

I'm done..I've said too much now.

Lisa D said...

Don't you ever feel bad for being an advocate for Kevin.

I had a similar altercation with medical professionals once...I told them that I didn't give a rat's you know what about their administrative, procedural whatever problems were. I only cared about ONE patient and I was damn well going to make sure that ONE patient got the care they needed and deserved. I do believe what they say about the squeaky wheel.

I know you are tired and sleeping in a chair that turns you into a taco...but I believe that Kevin has done so well overall because you have been by his side.

It is ok to get tired and overwhelmed and frustrated...I think there would be something wrong with you if you didn't. This blog is a place for you to vent and you should not feel bad for that.

I know the impulse you have to get Kevin and run from that hospital as fast and as far as you can, but I know that you won't take one step outside without knowing that is the very best thing for Kevin at the time.

I'm so sorry that you are all going through this...and I know I don't "know" you, and could never really understand what you are going through, but I've lived in a hospital and slept in the taco chair...and I believe that you simply have to keep being a fighter. One minute (or hour or day if you are lucky) at a time.

Check in on that patient advocate office, call whoever you need to and take advantage of whatever help you can find. You are doing an amazing job.

Vicki C said...

Oh.. it's all so frustrating at so many levels. Just reading about all that goes on for you guys, is frustrating! I wish there was just more help and support there for you. I dont know how long you are going to be able to keep this up? I dont have a clue how the heck you managed this long!!! Oh.. I am so sorry things are so rough for you friend. I wish there was more I could do to help.

The Rock said...

Wow, Leslie you go girl !
And you already had good Advice about the Patient Advocate .You shouldn't have to deal with arrogant Doctors ! And make sure you write all this down and the times and the Names . It is good to keep track of ; what's wrong .
I am so sorry that you have to fight another Battle ! But what doesn't kill you makes you stronger.
Also I agree with Anonymous ; get in touch with your Congressional Rep.
I am saying a special prayer for you and Kevin.
Get some rest !
Hugs
Petra
Soldiers Angel

Diana Bellman said...

Les, stand your ground and don't let no one pull any B.S. Kevin was doing a good job with recovery and all of a sudden he's not. Keep on the dr.'s and nurses and make sure he' getting the care he needs no matter what that entails. Don't back down. Thinking of and praying for you all daily. Love you all
Diana

Alison said...

I agree with the first commenter up above. CALL YOUR REPRESENTATIVE and tell them what is going on. If they don't do anything, then start going to the next rungs up on the ladder until someone DOES listen and things get fixed.

Every patient is different. Every injury is different. The doctors there can't treat everyone as the same. If you do not feel safe with this patient being Kevin's room mate then don't let him stay there. Raise all hell until Kevin is getting the care he needs and the care he deserves.

This setback is so frustrating but these things happen. I think once things settle down (I hope they settle down) in the next few days and you get a chance to think this over that the situation will be clearer. I agree that 'home' may not be the best place for Kevin even if you are 'stuck' in Tampa...if there was an emergency I would hate to think what could happen.

Get in touch with the Patient Advocate office and get in touch with your Rep. to get things changed. It's not like Kevin is some new patient they have no idea how to deal with! You know what works so do your best to get it.

I agree also that you could use a break (but God knows I would be right there in that chair not about to budge an inch) so I will just hope and pray that you get some time to yourself to think things through and catch some good solid rest in the near future.

LOTS of thoughts and prayers coming your way from SoCal tonight. I wish there was a magic way to make this better but all you can do is keep fighting on.

YOU CAN DO IT KEVIN!

Anonymous said...

Let Moe stay with Kev, and try to get some rest...you need to take care of yourself, so you can continue to take care of Kevin. You have some great friends...let them help you!!
God Bless, and many many prayers being sent your way.
Chin-up...
em

Anonymous said...

Please take care of yourself. I've used this analogy before, but remember the flight attendent's instructions about oxygen. If you're with someone and there's a problem, put the oxygen on you first, then on your companion. You can't take care of Kevin if you're not healthy, physically and mentally.

That being said, the physicians and nurses didn't hold a lottery to see which patient they would neglect and chose Kevin. Be proactive, assertive and agressive, but make sure that you understand where your expertise ends and the specialists' expertise begins.

Please take care of yourself. Right now - and I'm glad this anonymous - I'm more concerned about you than Kevin.

Anonymous said...

Anonymous- please read Holee's comment and reread it if needed. I am with you all the time...My heart goes out to you all...get rest...

Anonymous said...

Please understand that I care for you, even though we have never met. So take the following as an expression of my caring and concern. I agree with Holee. Please think about everything she said. At least just think about it, ok?

Patient advocacy is good. Try that. But, first try to step back a tiny bit and find the good things; like a private room that is too small for an unwanted roomate. Rather than be upset because it is too small, look at it like he now has the privacy he needs.

Please try to get away from the hospital a little bit. Just a little bit more. Maybe talk to someone who can offer you some emotional support as you have given your all to your (our)beloved hero. Kevin probably knows that you are upset and is that really a good thing?

Do your advocacy, absolutely, but please take a big breath first if you can. Then, pick your battles.

Cathy M

Long-time RN said...

Plenty of good advice from readers.
This setback is most frustrating, and your anger in questioning a cause and possible delayed treatment are reasonable. You've got a whole lot going on right now, take a breath, step back for just a moment. Taking care of Kevin 24hrs a day at home may be exhausting at this point if you were trying to do such a task alone. Continued prayers for Kevin. Prayers that Kevin receives the best of care, and for continued fortitude and times of rest for you.

Anonymous said...

Leslie,
I wish I could offer you more support and insight but just like most of your other readers, I am looking from the outside in.I am not in your shoes and I can only try to imagine as a mother,the emotions you go through daily.
You have been so strong for so long and it has to be hard on the body and mind to go through so much with so little rest.As others have posted...try to get any rest when you can,even if its just a minute or so here and there.
Always remember this,we readers do know that you have your son's best interest at heart everytime you make any decisions...we are not questioning you,just worried about you all.
Praying for you three and for families everywhere that are dealing with hardships and sorrows.
Kim S

Anonymous said...

Leslie, I have been reading your posts since I first read your article in the Pgh. Post Gazette. My heart has been with you all this time. I feel like I know you and your family and have been praying for Kevin and all of you. I can't wait to hear that he is feeling well, has had all the surgery he needs and is safely at home with you. YOU are an angel of mercy for your hero or should I say OUR HERO!! Ellie S.

Anonymous said...

I'm the first anonymous poster. The Patient Advocate's Office is a formal office in the VA staffed by employees whose job is to serve as advocates for the patients and to help with patient/staff issues. They are sort of outside of the "chain of command" if that makes sense (sorry, I don't know how to word it. If Leslie isn't already working with them, they will be the best next step to help her work within the system. They can be very effective. The congressional rep is more "outside of the system" and works best when used as the "last resort" if there is no resolution from within.

Jessica said...

Leslie, you and Kevin and Breezy have been on my heart all day. I'm praying that God will give you the strength and wisdom to deal with all these problems and difficulties. I also am praying for wisdom for the doctors and nurses and that they would be motivated to help Kevin and ease his pain. I hope that you're able to find a way to be encouraged, strengthened, and refreshed. My thoughts and prayers are with all of you!

Anonymous said...

Having not read the blog in a few days. So sorry to hear of Kevin's recent health problems. So after this next big surgery things will be better from what I understand? If you take him out of the hospital will you have nurses and other trained staff helping to take care of him at home? If not how are you to even sleep? What if he falls over or what if you get hurt and there is no one there to help him or you? This is a lot to take on and maybe should not be done yet. Just trying to help you think outside the box.

Kris said...

What I wouldn't give to have the power to just stop the ride and let you all off!

Our heroes deserve the best care on the planet regardless of whether they have a hang nail or are recovering from life threatening injuries. And so do the families - the least you should expect is support, and certainly piece of mind that your kid has the best care even when you're not in his room. Good grief it is so wrong on so many levels!!

Please know that we're praying so hard for massive amounts of strength, peace and comfort for all of you. God bless you Leslie, Breezy & Kevin, God bless you all. And big, ginormous hugs are always coming your way too!

SOOOOOOOO relieved to read that Kev is eating and drinking again. PHEW. Talk about a strong, courageous HERO. Kevin is truly an extra special miracle! And have I ever mentioned that you and Breezy have superhuman, herculean strength and resolve!? What a team you guys make - wow!

- Kris, a Soldiers' Angel from RI

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