Well after one emergency surgery, 2 additional incisions and 11 lbs of CSF (
Cerebrospinal fluid) removed from my abdomen - I'm finally home!
I guess in order for you to know whats taken place over the past few days, I have to go back to the beginning of last week. I will do my best to try to accurately explain what has happened, but this past week has been a complete blur so forgive me if I leave something out.
Since having the setting changed on my LP shunt on Aug. 22, the swelling at the incision site on my spine and my stomach continued to INCREASINGLY
get worse by the minute. (I would post pictures of how big they were but unfortunately I've already seen the look on my family's face as I forced them to repeatedly look at it and I do not want to cause any vomiting so early in the morning!) My headaches continued to worsen and I was at the point where I thought I would just die if I did not get some type of relief soon. I immediately began trying to get ahold of my surgeon as I knew something was not right.
On Wed., August 31, my surgeon's PA called me to see how I had adjusted to the new setting, unaware of the messages I had been leaving. When I began to explain what was going on she immediately told me to come into the office the next morning to see her. She also advised me that she would try to get a ultrasound set up for after my appointment to look at the shunt and make sure everything was working properly.
The next morning I decided to go into work for a few hours before my appointment. By the time I arrived at the office the surgeons office was calling me asking if I could come to the hospital first for the ultrasound. Since it's about and hour away I told them I would be there as soon as I could.
I arrive at USA Hospital and was immediately taken back. One panicky tech and 45 min. later I was on my way the see the surgeon. I did not even get through the office doors and he was standing there with his PA and a resident asking me to lift my shirt so he could take a look. Immediately, he told them to get general surgery on the phone and set up surgery for first thing the next morning. This is when the waterworks show began.
Surgery? What? WHY??
Apparently because of previous scar tissue from my C-section, of my second child, my body was not absorbing the spinal fluid as it should and I now had a large pocket of fluid accumulating in my abdomen and backing up into my spine. "The fact of the matter is if we do not get it out it will become septic!"
I left his office a complete
emotional basketcase and looking back now wonder what those driving beside me on I-10 thought as I sobed hysterically while driving 40mph. I did not want another surgery! I've only had this stupid thing in for 8 weeks and somethings already wrong!
Surgery was set for 11:00 the next day. As I re-played the days events in my head, all I could think is "Please God - don't let this be happening." But it was.
My husband raced home from Georgia, my sister agreed to pick up the girls from school and my parents were all set to be at the hospital with me.
As I was being prepped for surgery, so many things were unclear. Nobody could tell me exactly what they were going to do, how long it would take or what the chances of this happening again are. All they knew is that the shunt had to be moved and the fluid had to come out. How they were going to do this, they were unsure of until they got in there.
The surgery took a little over 3 hours, I think, and they moved the tubing to above my liver. The ended up removing over 11 lbs of fluid from my abdomen and having to make an incision in my belly button and re-open my already sore abdomen scar. I awoke in so much pain that even the 10mg of morphine every 2 hours offered no relief.
I am bruised from my back around to my belly button on the right side, my right hip feels as if they repeatedly hit it with a bat while I was asleep and the pain in my abdomen alone is enough to make me want to curl up in a ball and cry. (However, I am positive this will only make the pain worse.) Two days in the hospital with some amazing nurses and I was able to come home yesterday.
I am still not exactly sure if the tubing came loose from the valve or if my body is just not capable of absorbing the spinal fluid. I was not able to get a real clear answer out of anyone I asked. I do however know that I hope this is the first and
last revision I ever have to undergo. While some may think lying around and being waited on hand and foot is the life, I must say it's not the life for me!!
I would not wish this pain or this disease upon anyone or anything. My heart breaks for the children who suffer in silence or who are mis-diagnosed with this. Unfortunately, there are not alot of options when it comes to those suffering with ICH and AC. So for now I will pray that medical technology continues to advance each and every day and the God lays His every loving hand upon those who are suffering and is able to offer them some type of hope and relief for a pain free future!
Many Blessings,
Jessica
