This has been a week I would have gladly skipped. On Sunday, the cultures came back from the fluid in my head and it was positive for Staph infection. Ok, so it's positive and I need to go on some antibiotics... "no big deal" I thought. HA!!! Well, I am now on IV antibiotics every 8 hours to take care of the infection and I'm now being told I'll be on oral antibiotics for it for the rest of my life. FUN!!! This news would not have been as big of deal if I felt that someone... anyone... had a clue what was going on. The people at Infectious disease would say one thing, my Neuros would say another, and the story would change almost hourly. At this point all I really wanted to do was go home. It would have been very easy to send me home Monday on the IV they had started me on and done bloodwork, further testing, and medicine adjustments from there (I have home health here and I am actually giving myself the IVs) ... but no Infectious Disease had to be a pain in the behind and wouldn't let me leave until they knew exactly what kind of infection, how much of the antibiotic to give me, etc. All bloodwork and cultures had to be complete before they'd send me home. Even then they were scheduling tests for when I was supposed to be home. In the end, I was told I'd get to go home Wednesday. However, as of 5 PM on Tuesday, they still had not sent the scripts for my IV to home health (whom needed it by 4 PM). Therefore it wasn't until Wednesday morning that they agreed I could leave and have a late dose of my IV antibiotic. (The thing has an 18 hour life so why it's as big of deal I'm not sure.)
Anyway, we did get out of there Wednesday and got home around 7 PM. We met with a Home Health nurse that night for training for me to administer my own antibiotics. We're doing very well with it. However, I think the 8 hours between thing is going to get old quickly (and as big of idiots as ID is, I don't look for them to even be willing to consider going to 12 hour doses.) Therefore, I get to take my IV at 4 AM, Noon, and 8 PM. Woohoo!!!
To top it off, I'm on a low dose of Prednisone AGAIN. It's ok, I won't be on it for long because I'm supposed to finish it on Saturday. I'm truly struggling with many things right now in the breathing department. Between the Prednisone cough and the labored breathing caused from the antibiotic, it's making my recovery more painful then it really has to be. However, not much we can do.
I realize that this is probably just another confusing piece is the puzzle of the last week. I really didn't get to write a good post about it. Truth is, I'm not much in the mood to relive most of it because it was a huge headache. The shunt is annoying, the PICC (Peripheral IV that has been placed in my arm and goes straight to one of the larger central lines to make getting my antibiotics easier) isn't too bad but it prevents me from showering the way I would like, the coughing and inability to breathe sucks when all you can do is exhale at times, and it is a pain to try to minimize the pain in both your abdomen and head at the same time.
On the bright side... even though it took forever to get things sorted out to get here, we are home, I slept great in my own bed last night, and everything seems to be going ok.
I am about ready to snooze now. I've been going way too long today so I will try to update with better frequency from this point forward.
So you've stumbled across my blog by accident and you are wondering what is really behind this blog. I can help you catch up quickly. In short, my name is Amy, As of 2000I am years old, happily married to my hudband,John, for 12 years, and have a 12 year old son. Oh, I was diagnosed on August 22, 2007 with a brain tumor.
All the important things (without my daily ramblings) can be found under the heading of beginnings and I would also recommend Updates. You can quickly see them all by clicking on those links. I hope this helps you get caught up with my world.
You can read my posts on surgery to read about surgery in posts written by me during my stays in the hospital and those updated after the fact to fill in all the holes. Following surgery and the discovery that my brain tumor was a Grade Three Anaplastic Astrocytoma, I went into radiation. This was not an easy decision but you can read about it and my decision process in radiation. I did begin having seizures in 2008 and issues with Hydrocephalus/regrowth in 2010/2011 and then chemo in 2011 where I am cuurrently receiving Avastin and the steroid Decradon.
I hope this blog can help others going along the same journey as me. Remember you are not alone.
I wish to post a disclaimer that I am NOT a doctor nor do I play one on TV. Therefore, nothing mentioned in this blog should be taken in the place of your own medical professional. What works for one person may not be the best solution for another. If anything I do in my blog can be brought across, I hope it's that you have to take your life and medical care into your own hands and use all the wonderful tools you have at your resources.
My experience with my brain tumor will not be the experience you have because no two tumors, just as no two people are alike. However, if showing my experience to you can help you on your journey, then I have accomplished a huge goal in my life and that is to help others.
Remember that attitude, support, and God make up 90% of the battle!!! always believe in the positive. god spEED!!!!!