Friday, September 16, 2011

9/16/11

It is Friday and I have come to realize that I should provide some sort of update.

First please don't be upset with me for not sharing the following details sooner. I felt it was important to get through the worst and complain and moan to the walls, so that I could enjoy the best and carry on a conversation without complaint.

During the last part of July this year I found out that I had an infection brewing in my head. On the 27th I went in for surgery to allow the experts an opportunity to take a look inside my noodle again. With steady hands and much patience the bacteria was cleared out along with a portion of my skull. The portion of bone removed is called a bone flap. The missing portion of bone is about the size of the palm of your hand. Placing the palm of your hand on your hair line on your forehead and that is about where the portion of bone was removed.

Just when I was wearing my hats less I am now back to wearing them every day again. Gosh.

Some of the details:
The infection began to make itself know in the middle of July when a significant area around both eyes began to puff. This included my eyelids all the way to my eyelashes and the entire area around the bridge of my nose. I went to see my GP who gave me some oral antibiotics, which took care of the swelling but then I began to grow a horn on my forehead at my hairline. After that broke open and began to weep I thought "O.k. this is good. I'll let it drain, scab over and move on with my life". That was not what happened. It just kept weeping. So I went in to see my neuro surgeon, who I had not seen in over 3 years. It was after that visit that I was told to be back at the hospital the next morning at 6am. No food or drink after midnight the evening before. Then I hung out at the hospital for the next 3 days. I also received a PICC line, which by they way is a gift from the almighty. A PICC line is a semi permanent iv line placed in a persons arm thus allowing for the body to accept liquid drugs at anytime. An added bonus, and I am saying this with ZERO sarcasm, blood draws are super easy. No additional pokes. Just hook up the tube to the line and let the blood flow.

What I have learned:
I have learned to give myself medicine via my PICC line. The liquid is in a syringe of sorts. I have also figured out that I have a new "guy" at the infectious disease pharmacy who runs point for me when I need him to. Awesome! I have learned that having an nurse who will drive to my home to draw blood ROCKS. She is very cool and will also make phone calls on my behalf which helps so much. I was reminded that driving takes A LOT of concentration and concentration takes energy and energy requires the body to eat and sleep.

The treatment plan:
I will be wrapping up 8 weeks of iv or liquid antibiotics next month and then my PICC line will be removed. Then I will begin about a months worth of oral antibiotics. After this I will be in a wait and see phase. We will wait to see if the infection manifests itself again. I'll know if the bacteria are still there because my forehead will begin to itch like crazy and my eyes may puff up again. After we (the surgeon and I) believe the infection is gone then and only then will my plastic surgery be scheduled. Yup, there is another brain surgery in my future. I will receive a piece of plastic shaped to fit my head. There are 2 benefits to this surgery. ONE - My head will look normal again. And one day I'll be able to wear less of my camouflage. TWO - I will receive a mini face lift. Hooray! Two birds with one stone.

Where I am at:
I won't lie, those first 2 weeks after the infection surgery SUCKED. I'm a little ashamed to admit that if there was an option for me to quit and give up during that time frame I would have. I couldn't stand the sight of my face in the mirror, my head itched like crazy and I had horrible headaches again. Fast forward to today. I feel better. I can do almost all of the things I was doing just before this surgery. I go for short walks and I'm able to make dinner. Dinner sometimes includes a spoon, milk, and a bowl.

What I see happening:
Once I get that plastic in my head I am looking forward to growing my hair back out, and going for another hike. I am going to focus on having an Attitude of Gratitude and make a serious effort to enjoy every persons company I come into contact with. If you are reading this blog YOU are not the "person" I am making an effort to be around. Finally, I see my 2011 holiday season being enjoyable and special.

Best,
Jen

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