Tuesday, November 4, 2008

Day 157 - Nov 4, 2008

Things are pretty much the same as they were yesterday. Kevin has been in a bit of pain today, with vomiting and many naps.

A few of you have asked why the pain hasn't been managed all along and it's really just because it hasn't been necessary. We go for long periods of time with very little or even no pain whatsoever. I had trouble in the beginning with the nurses thinking Kevin had to be in pain due to his burns and multiple other injuries and they were medicating him constantly. I had to nip it in the bud because it was causing him to sleep all day when it really wasn't necessary.

Today though, because it's been going on more and more, we did have a pain management doctor come in and we discussed treating it long term. We set up a plan and we shall see how it goes. I am just loathe to do this for a couple of reasons. Number one, Kevin builds up an immunity to the meds kinda quickly. I hate to over-use something that could be necessary later and when it's really needed - it will no longer do its job. Number two, as I mentioned before, we really don't want to take home any addictions. If I honestly thought Kev was in pain daily - I wouldn't blink an eye about keeping him doped up. But we really don't have pain all that often and I worry this might end up being more of a problem than a solution.

Gosh, I just don't know what's the right thing to do here. A constant drug regimen or use it as needed. I wish the answer would just drop from the sky...

As to Megan asking about the CSF sac draining being a good thing? Yes, it actually is a good thing, but I think it's happening too fast. It stands to reason that extreme changes in size over the course of 8 hours or so would be hell for any reason. I have noticed a pattern of pain when there are speedy changes as opposed to having it happen gradually over weeks at a time. From what I am gathering, the docs are thinking that the sudden release of that tension is causing nerve endings that were accustomed to that pressure to throb in their new 'free' environment. Make sense? And for the record, I'm not sure any of this is correct. These comments are based on a newly educated guess after watching this happen for months now. And I am also learning that the docs just don't really know all that much about the brain. I guess it's just one of those organs that there is no way of knowing much because it differs in every one of us.

So hopefully we will feel better tomorrow. We have an outing planned to go to the mall and do some shopping, but if Kev is feeling like this - I don't plan to take him. Keep your fingers crossed...not so much to take him shopping, but that the pain subsides. I'm not sure either one of us can do this another day...


Holee said...

For a long time I refused anything for pain for the exact reason you fear and because I don't have extreme pain all the time.

Addition is something you can't live without while taking pain meds to control pain is something you use for that purpose.

I take vicodin, not a mild drug and one that drug users would be addicted too. But like the doctors explained, I am not a drug user, I actually have extreme pain. Now, I don't know why I refused this drug for so long. It makes my life so much better. Now that I have control of the pain, I only take 1/2 a pill when I need it, and that's usually at night. Another thing about it is I don't end up in the ER screaming in pain anymore.

At first pain management had me take it all the time, a full dose, until we got control of when and why I was having pain. They reduced it when I complained of sleeping all the time.

I wouldn't fear controling Kevin's pain with drugs for now. He may need a mild pain killer at times or forever and that's not an addition, it's a need. There is no need to be in pain for 24 hours when you can stop it. If he sleeps all the time ask them to reduce the dose until you find a dose that he can be without pain and still function all day.

I will never be without needing a controled dose of pain meds and that's just the way it is. I still live a normal life, use machines and drive a car. I'm not a drug addict. Pain management is a good thing.

Sarah said...

I guess the release of pressure makes sense. Kinda like when your foot falls asleep. I can only imagine what that must feel like with the brain tho, ouch! I hope he feels better again. If the doctors think it's nerve pain, have they tried maybe a regimen of something like neurontin? It's not addictive like an opiate based pain killer. That would at least take care of one fear.

Anyway, you guys take care of yourselves! And everyone at work is amazed at how well he's doing now. The bad days just seem to get fewer and farther in between.

Lots of love from work!

Kris said...

Stepping up the prayers even more today. Praying so hard that Kev is feeling a little better, praying so hard for your strength, peace and comfort, Leslie & Breezy. Big, huge hugs are being sent to all of you all day long.

- Kris, a Soldiers' Angel from RI

Jane said...

Please contact the Fisher House if you have not already done so. Paula Welenc, CMSW is the Manager. Her number is (813) 910-3000. It's a place family members can stay for free right near the main hospital. Kinda like a Ronald McDonald house. I toured the VA hospital two months ago while at a conference at McDill. I used to volunteer at the two Fisher Houses at Landstuhl Hospital. I can't imagine your strength...he's lucky to hae you as his Mom. Jane

Brenda said...


Hi hon. Just a thought..I hope you'll understand that I work & train rescue dogs..besides having taken care of my mother..So I may suggest things that have happened with my dogs and may or maynot help you out , however, please know that I'm not comparing Kevin to a dog ..

You might want to keep a weather log..I had a lab that had a head injury..When ever the weather changed and the barometric pressure either rapidly went up or down, he became very ill and throwing up..He was in great pain almost like having a migraine in us..

If you can try and go back and check what the weather was doing or what the pressure was on the days when Kevin really was having a bad time.( ex. rain, thunderstorm, etc.)

Hope I didn't offend you...


Diana Bellman said...

Les, I hope all goes well and Kevin isn't feeling pain anymore. My heart goes out to you. Keep your strength and faith. Remember, 1 step backwards, 2 steps forward. With you, Kevin and Breezy's strength and determination, you will overcome this hurdle and things will be better soon. Love you all and thinking of you daily.
Love, Diana

Vicki C said...

hope today is much much better!!

Jodi said...

Les, I am so so sorry Kevin is having such a rough time.  It hurts me to hear him in pain.  It hurts me that you and Breezy have to see him that way.About the addiction....go with your gut Les.  You're his mom.  You know him best.  With my health issues, I had an addiction problem with pain killers at one time, but that was 7 years ago, and I won't let it happen again.  I take the pain killers when I absolutely have to, and that is maybe once a month, otherwise I just live with the pain.  In my opinion, and with everything you've told me about Kevin, I bet he would only want pain killers when absolutely necessary and deal with the pain when not so bad.  He is a fighter Les.  He is independent.  An addiction will never control him.

And in regards to your statement, "I'm not sure either one of us can do this another day..", Yes, yes you can, because you have to.  All 3 of you are fighters and you aren't going to give up!  It's been a rough couple days, but remember all the fantastic days you have had recently.  You will have them again!  Stay strong, stay positive, and hang in there.  You have all of us out here pulling, praying and hoping for you 3.  You have our love and support!I hope today has been better for you!

EXTRA healing and positive thoughts for Kevin.EXTRA strength for Leslie and Breezy.Safe thoughts for all military personnel and strength for their families.EXTRA BIG HUGS AND ALL MY LOVE FOR ALL 3 OF YOU!!!Andrew's Aunt Jodi

The Rock said...

I am glad that you have wonderful Doctors who will make sure they are doing the right thing about his Condition.
I hope things are getting better!
God bless you
S. A.

Jessica said...

I'm praying that the doctors will be able to work out a good pain management plan for Kevin. I recently learned that there are doctors who specialize in pain management called palliative care. Consulting a palliative care doctor might be a good idea if this situation persists. And I can certainly see where you're coming from regarding not wanting to start any addictions. What a frustrating situation. :(

BigD said...

Hi Leslie,
I wanted to email you but I can't seem to find your email address.
I wanted to send you an email about your last post, but, it was a little long for this comment area. Anyway, if you are keeping that private I understand. Hang in there Leslie, you and Kevin are an inspiration to me!