Wednesday, November 5, 2008

Day 158 - Nov 5, 2008

Things really weren't all that much better today. Kev has been in pain and he has been vomiting on and off all day. We started our pain management regimen today too, but we already had to up the doses and tonight we had to give him a shot of a totally new painkiller and finally...Finally! He is feeling well.

It's currently 11:11pm and he just ate half a pizza. It's the first time he felt well enough to eat today and when Kev can't eat? There's a real problem.

So I think the pain management doc and I are going to need to revisit the situation tomorrow. I did talk to our primary doc about this as well today, and he is thinking that we need to go a step further, at least for a little while.

And obviously we did not go to the mall today. We are going to try again tomorrow. Hopefully he feels better.

So getting to some of the ideas y'all have thrown at me...first, Brenda - I would never be offended from you comparing Kev's situation to your dog's situation. And actually, the weather change makes a lot of sense. I will say that it has been on the cold side here lately and someone keeps turning his heat down in his room making the temp fluctuate (nobody knows how it's happening though...must be a ghost - and yes - you are hearing sarcasm drip right there). But anyway, I don't have time to go back and check this out, but I will pay attention to that from here on out.

And this could so be grasping at straws, but I remember there being a link to certain dyes and hyperactivity in both children and adults. Oddly enough, Kevin has been drinking red Gatorade the last three days. I don't know if this could have some bearing on it, but I won't be buying red for a while, just in case.

Sarah, you mentioned Kev taking Neurontin. We are actually in the process of weening him off of that. We just started it recently and we believe that is what was causing him to sleep constantly. It seemed every time he took those pills, he was out like a light within 20-30 minutes. We are down to only taking it at night and happily - he didn't take as many naps today. And tell everyone at work I said "hi"!

So many things going on all at once, huh?

Holee, I agree that pain management is a good thing, and I am all for it when necessary. In the past, I would never have worried about Kev taking pills unnecessarily, but he's not mentally the person he used to be. I was watching him ask for sleeping pills before even trying to go to sleep. I also was seeing him ask for pain meds while playing around without any signs of pain. I think if a person can mentally make a decision on their own, that's one thing. But when a nurse or doctor looks at me and asks if he is in pain - I have to say whether to drug him or not. And there have been times he has asked for strong meds and I have went to the nurse on the sly and made them give him Tylenol instead. I just don't want to be the cause of his addiction and I also don't want him to be the cause because he just doesn't realize the consequences of asking too frequently or when it's not really needed. Kwim?

And I do realize that it's possible that Kev will probably be on some form of controlled substance for the rest of his life. I just need to know it's necessary and up until now - it hasn't been. And what if this is just a temporary thing and we end up medicating him without him needing it?

So, so confusing. And so, so scary knowing I could be making a wrong decision.

Moving on though, Jane - you mentioned the Fisher House and that is actually where I stay. If we didn't have that - I would be sleeping on the bench in front of the hospital with two other homeless people that are always there.

Ok, I need to get to bed. A nurse came in and was discussing Kevin with me and it's now almost 3am and I have to get up soon to go back up to the hospital. So, I am cutting this one off in the middle.

Remind me to tell y'all what the CT scan showed...

9 comments:

Vicki C said...

I have NO idea HOW you keep this all in your head girl!!

Brenda said...

Hi Leslie,

Me again..Two things..lol..

1..about the thermostat ...set the tempo you want and then cover it with a big wide strip of duck tape.

2..On a more serious note..When my mom was so sick and could not keep food down her gastroenterologist would give her low doses of erythromyein. He said sometimes her stomach could not empty fast enough causing to much food to remain in it.. It was during these spells that he gave her this. I would never have thought it would work but it did..

Give Kevin my love..

Brenda

Anonymous said...

Leslie,
My name is Dawn Cox-Henry and I am Vice-President and Treasurer for the American Legion Auxiliary Post 117, Main Street,Butler. We need to get in contact with you!!!! Please give me a call on my cell # 724-822-8047 after 4:30 pm. God Bless you and your family and Kev sounds like he's got alot of support.

Marianne Q said...

Leslie,
I'm a former Pittsburger now living in AZ -- have been following your story for months now after reading the Post Gazette online. I have four children, ages 7-18.

MY Kevin (7) has extreme chemical sensitivities -- artificial colors, flavors, preservatives can cause him to totally wigg-out...kicking, yelling etc. That stuff is totally nasty and can cause behavior and learning problems, headaches etc (see www.feingold.org). Now that(my)Kevin's system is "cleaned up" -- he is the sweetest little guy in the world...total night/day difference!

As I've been following your post, I've actually thought about suggesting that you watch what Kevin eats. His body needs all of the help it can get to heal, why give him anything with potentially harmful ingredients...? Matter of fact, I would LOVE to send you all a care package of homemade goodies -- made with only the best ingredients. (I have always loved to bake,now I bake so that Kevin has "safe" foods to eat.)If this is alright -- and perhaps if you have any preferances (chocolate, peanut butter, oatmeal..???), please let me know.

You are such a great mom -- with a couple of great kids, and we are cheering you all on from AZ!!

Anonymous said...

I can completely understand how worried you are about Kevin getting addicted to narcotics.It is scary to think about him being dependent the rest of his life. Hopefully this will ease some of your concerns. When someone has pain, the pain receptors take in the medicine and use it to ease the pain. Dosages differ for individuals depending on the amount of pain they are having. Sometimes the body demands a great deal more for some people than for otheres. When there is a demand for the medicine, usually people do not get addicted. Hope this helps.

Anonymous said...

How about setting the thermostat at the temp you want it to be and then put a strip of tape over it and a little note stating that because of patient's medical situation, under no circumstances should it be changed!!!

I have followed your story from the very beginning and can't believe the improvements that Kevin has made - I'm so happy for you and hope these little bumps in the road don't get you down too much.

The Rock said...

Leslie I know you have your Hands full, with trying to remember what the doctors say and what you feel comfortable with and how Kevin feels. It isn't always easy but you are doing well. Don't ever think that you are doing the wrong thing. You are a Mother and Kevin is your Baby. You would do anything for him and that is why I say a Mother isn't wrong when she worries about her son and addiction. But I think you shouldn't worry about that !
Praying for you and Kevin and also Breezy
Love
Petra
SA

Jodi said...

Hi Les,
Again, I am so so sorry Kevin is having such a rough time. And you and Breezy too. But I know better days are ahead! Please stay strong, please stay positive, and please remember that we are all out here praying, wishing, hoping, and pulling for you 3. We all wish there were more we could do, but know that we are out here and love and support you all.

I am going to be gone a couple of days with no access to a computer (or electricity or cell service for that matter :-) but I will be thinking about you all the entire time! And I hope when I get back and catch up on your posts, that things will be getting better!

Kevin, I know you are hurting and I wish to God I could take your pain away kiddo, I wish I could take all the bad away, but please, hang in there! You are a fighter! You will work and fight your way thru these difficult days. Keep fighting!!!

EXTRA healing and positive thoughts for Kevin.
EXTRA strength, comfort, and peace for Leslie and Breezy.
Safe thoughts for all military personnel and strength for their families.
EXTRA BIG HUGS AND ALL THE LOVE IN THE WORLD FOR ALL 3 OF YOU!!
I love you guys!
Andrew's Aunt Jodi

Jessica said...

I'm so sorry to hear Kevin is still suffering like this. He's in my thoughts and prayers and I hope today went a lot better. You're doing the best that you can for him and I know it's making a big difference. I'm praying for God to give you the strength to handle all these things.