Thursday, February 28, 2008

Answer to your question...

The shunt is a permanent feature of Charlie but something that is more common than I thought. The tube runs from the middle of his brain where the spinal fluid is stored, through his skull . There is extra tubing in his abdomen to allow for him to grow. They say an average person comes in 5 times in their life to have it readjusted/lengthened. There are some people that do great and never have problems but there are also some that don't do well and have to come in a lot more frequently (infection or scar tissue). There is no way to make sure the shunt is working other than checking the size of his vetricles by a brain CT (X-ray). There are phyisical signs that indicate increased brain pressure which could indicate that the shunt is not working. Things we are supposed to watch for are decreased alertness, unequal pupils, change in behavior, unexplained fevers, agitation, feeding difficulties. So basically everything that he currently does. This is what makes me so nervous. Hopefully by the time we go home he will be more stable and I will be able to distinguish between the "new" Charlie behavior and shunt malfunction.

11 comments:

Anonymous said...

So is it all internal or does it drain outside of his abdomen?

The things we can do these days! Just crazy!!

whitney said...
This comment has been removed by the author.
Anonymous said...

Angel: As your friends have said you will learn! Just know that if you need support your friends that you see and those who you will never see or meet like me wiil support you even if only in prayer. I also have physical disabilities. They are not as complex as Charlie's but I Want you to know that your little guy has touched my heart. I know that as you adjust to everything, there will be struggles and triumphs. Let's hope there are more triumphs!
God bless Shyla from Montana

wilkinson_fam said...

I heard about your little boy through a friend that went to school with Rob (Julianna Strunk Wolfley). Our 3-yr-old spent last November in Riley Childrens Hospital fighting a rare bacterial pneumonia that ate everything in its path, lung included. We went from penny-pinching graduate students one moment to becoming self-educated on medical terms, medications and diagnosis the next. Even though she is home now we are still quarantined and fighting this awful sickness. But I must let you know, there IS hope. Others are there to help you and those beyond the scope of your awareness are praying for you and little Charlie. He sounds like a fighter. Kids are so resilent and they can pull through the worst of circumstances. Know our prayers are with you, your baby, those that are working with Charlie at PCMC and that another family can relate with your exhaustion, worry and faith.

God Bless -
Amanda and David Wilkinson

Charlie Cooper said...

The shunt is all internal- it runs under the skin to the abdominal/stomach cavity. It looks like a big vein popping out like body builders when they are lifting extreme weight.

Anonymous said...

I love the input from people in Missouri,Australia, Wyoming...etc. It just goes to show how small our planet is and how we are interconnected in many different ways. How amazing that you can have close family pray along with people literally from all over the world? Wow! I wonder if little CCC has any idea how much of an impact he has made in his 9 months here on earth. More than I have in 50+ years...staggering..
Way to go Charlie, you are TRULY a blessing....

Kip, it is good to see your name up here.. how is your "not so little" family?

Marilee, keep writing......

Love You All, Jill B

whitney said...

Ang, thanks for the lesson. I hate that you have to know all these things. I feel like you are supporting all of us, when we should be shouldering more for you. Your strength amazes me.

Katie Williams said...

angel,
If you have any questions about how shunts effect people when they get older i'm sure Darin would love to answer any for you! He got a shunt when he was just a baby as well!! I hope that charlie has a better night tonight!!! We are praying for you!

Charlie Cooper said...

Tell me more about Darin shunt...
Did he have many problems with it?(infection, placement) Are his seizures related to the shunt in any way?

Katie Williams said...

angel,
I talked to darin this morning about his shunt. He said that they didn't have any problems with it, no infections or anything. He did say that after a few months they did remove it, so it was permament like i thought.

Katie Williams said...

whoops i meant wasn't permament-or however you spell it