A life without limits: We are going home!

Monday, March 21, 2011

We are going home!

We have been released. I asked if I could get a straight answer from some one before we left on what was going on because the fact that she was great for the week following her surgery then went down hill makes no sense to me. The nero team said her pressures were just not being tolerated but they were tolerated for a week just fine. I asked this question several times and never got an answer. My question was redirected and avoided. So nero called me on the phone as per the pediatric doctors because I am not confident about taking her home. I finally got a straight answer. No one knows what is going on. Nero surgery is very confused, they are not confident in any part of this case either. She said that they want her to lay flat for 3 days and then come back on Thursday and they will scan her and go from there unless she dips again. They just don't want to open her up if she is coming back out of whatever stoop she was in.
I told them I would rather them tell me they are confused with me rather than avoiding me and trying to act like they know what is going on because I don't buy the act. Dont get me wrong, i would much rather be in the comfort of my own home than here any day!

3 comments:

TroyMarch 21, 2011 at 1:08 PM
Welcome Home! Wish you and Avri could get the answers needed to help her feel better. This seems like a roller coaster ride.
Lots of love,
Sharon
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KatieMarch 21, 2011 at 6:18 PM
Thanks, Sharon. The only thing that makes any sense to me is that all the prayers, faith and her blessing healed her from what ever was going on. That makes more sense than anything else at this point. I will do what the doctors have asked me to do and keep her flat until thursday and then bring her back up. It has been a roller coaster ride.
Thanks for your thoughts and prayers.
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UnknownMarch 22, 2011 at 9:26 AM
Glad that you are able to go home. And yes, doctors should just tell the truth instead of tip toeing around an issue. Our prayers are still with all of you. Thinking of you, Traci.
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What is Hydrocephalus?

The term hydrocephalus is derived from the Greek words "hydro" meaning water and "cephalus" meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as "water on the brain," the "water" is actually cerebrospinal fluid (CSF) — a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.

The ventricular system is made up of four ventricles connected by narrow passages.. Normally, CSF flows through the ventricles, exits into cisterns (closed spaces that serve as reservoirs) at the base of the brain, bathes the surfaces of the brain and spinal cord, and then reabsorbs into the bloodstream.

CSF has three important life-sustaining functions: 1) to keep the brain tissue buoyant, acting as a cushion or "shock absorber"; 2) to act as the vehicle for delivering nutrients to the brain and removing waste; and 3) to flow between the cranium and spine and compensate for changes in intracranial blood volume (the amount of blood within the brain).

The balance between production and absorption of CSF is critically important. Because CSF is made continuously, medical conditions that block its normal flow or absorption will result in an over-accumulation of CSF. The resulting pressure of the fluid against brain tissue is what causes hydrocephalus