In September my three month old programmable valve stopped programming. Unfortunately it stopped working on a setting that was over-draining me. In October it was removed. The catheter in my ventricle was completely clogged and stuck. I had a brain bleed when my doctor removed the catheter to put in a new one. During the brain bleed my doctor noticed that the blood traveled through the ventricles and did not back up like someone with obstructive hydrocephalus would do. I was put in ICU for observation. The brain bleed gave me horrific pressure headaches for about a month and I've had trouble walking ever since.
When I got out of the hospital I got the flu after receiving a flu shot. I recovered from that after about a week or so and then was diagnosed with an impacted colon from all the pain pills I was on. That is when I had to stop taking the pain pills although I wasn't ready. I had a huge incision that was the length of my entire head. The colon felt better after a couple of weeks and then I started feeling sharp pains at the top of my incision. I started leaking fluid, puss, and started spitting out stitches. I was monitored weekly for about another month until it was determined that I had an incision infection.
During the whole time I was dealing with my leaking, painful incision, I somehow acquired pancreatitis. Let me tell you that is the most painful thing I have ever experienced in my entire life! We had to cancel our thanksgiving because of it. The only way to cure it is fasting to give your pancreas time to heal. Thanksgiving is my husband's favorite holiday so you can imagine how terrible I felt about it. Oh and I had viral bronchitis during all this as well. Coughing causes your intracranial pressure to increase. Every time I coughed, it made my headaches ten times worse.
I was taken back into the operating room to have the wound cleaned even though I hadn't healed from the pancreatitis yet. The infection reached the shunt and had to be removed. During a CT scan my surgeon realized that I had a natural pathway in my body from having a shunt for so long. He thought maybe the CSF would travel down the natural pathway. He removed the ventriculostomy that was in my brain to see if it would work. (A ventriculostomy works as a shunt temporarily.) The suture my doctor gave me wasn't enough and I had to be stapled 5 times. After the ventriculostomy was removed, I felt pressure when lying down but not when sitting up. Also we were able to see on the monitors that my brain was regulating the pressure on its own. We were all so hopeful that it might work and I would go home shunt free.
That feeling of hope only lasted three days. Because of the infection and all the surgeries I'd had, the skin on my head was extremely damaged. I started leaking CSF out of my incision in the middle of the night. The on-call doctor came in to re-sew the incision in my hospital room. Since my skin was so damaged, the numbing injections didn't work and I felt everything! At that point I couldn't handle all the pain and trauma anymore. I had a complete and total melt down at 1:30 in the morning with the on-call surgeon. I couldn't stop screaming and crying. He was able to talk me down. He had recently been in a situation where he was a patient and he understood what I was going through. Unfortunately his attempt to fix me did not work. I started leaking again and they had to put a shunt back in on the left side of my brain instead of the right.
When I finally got released from the hospital I came home to a toxic environment due to family drama. That delayed the healing process and brought on unnecessary stress.
So what did I learn from all this hell? The most important thing that I learned is that I am a strong person. People are always telling me that I am strong but I never believed it. But after dealing with an impacted colon, pancreatitis, and an infected incision on my own while still taking care of my son and house, I think I can accomplish anything now.
I also feel that being positive doesn't accomplish much of anything. I was so certain that my shunt wasn't infected and that I would be going home that day but I was so wrong and had to stay in the hospital over a week. Five days were in ICU so I wasn't able to see my son very often. Also I was hopeful that the shunt was coming out permanently and was devastated when I found out it wasn't coming out. If I had prepared myself for the worst, the disappointment wouldn't have been so incredibly painful. I still think about those three days of being shunt free and cry. I think it's perfectly acceptable to prepare for the worst but have the attitude that eventually the situation may get better. I am still waiting for my situation to get better.
Not so sure there is such a thing as karma either. That is all I have to say about that.
During those three months we learned who our true friends are. Some people that I thought were good friends completely stopped talking to us. I'm not sure if they just couldn't handle the situation or if it was something that we did. At this point it doesn't matter anymore. Now I know who we can count on.
The last thing I learned is that blood is not necessarily thicker than water. No one deserves to be treated badly by someone just because they are family.
I certainly have a completely different outlook on life from all the experiences I endured. I am still hoping something good is going to come out of all this as I prepare for my 25th surgery. All I know is that 25 surgeries is a big milestone and something that should be celebrated.
This is my incision from the surgery in Oct. Imagine dealing with this without pain medication.
No comments:
Post a Comment