Saturday, April 12, 2014

Keeping calm and fighting on!

This past Sunday and Monday I was waking up extremely nauseated. I knew I had to get rid of it since I was flying up to NY on Tuesday. Well Tuesday morning rolls around and I begin vomiting. I made it to the airport and up the stairs of the plane. And to no relief the plane ride was a bumpy one. Once we got off the flight we went to the hotel and I started to throw up again. My poor brother in law had to deal with all of this and take care of me. I was really hoping to feel better Wednesday so we could site see a little but I started vomiting again. I had to pull it together for the apt at 130.

At the apt the Dr was extremely nice and personable . We discussed the scans and he said that my brain ventricles are in a sense shrinking and if I have headaches it is a worry because there could be a build up of pressure. He said he has seen about 5 cases of this in children. He also agreed that this is very very rare in adults and he was going to send my files to John Hopkins. He will keep in contact with my team of drs here at UPMC.

So we are going to get on the airplane and my legs have become so weak that the pilots and my brother in law had to carry me and basically drag me to my seat. Getting off the plane was a site to see. I had 2 people carrying my legs down the steps and my b-i-l carrying my upper body. But we made it!

Thursday I was still very sick and barely got out of bed. I had a headache but was able to keep toast down. That was all I had eaten since Monday night.

Friday I attempted to shower and made it there with my walker. When I went to get out I couldn't move. I left my phone in the bed. I literally crawled from the shower to bed and called Jon. He got me into bed and I started to dry heave and got another headache.  At this point we called my neurosurgeons nurse and left multiple messages and emailed the neurosurgeon himself. Of course no answer. We decided to come to the er and I received a ct scan, of my brain to make sure the ventricles were not getting clogged and they weren't!

So today I woke up with a horrid migraine. Jon was rubbing my shoulders trying to rub out my muscles. The drs had fluids through my iv and pumping me with different pills. I felt that was making my stomach feel worse. I kept napping it off and around 1230 I started to feel better and better. I'm ready to come home now!

They sent out a test for the flu, they said it should be back tomorrow and then told me I have a viral infection. Everyone has to wear masks around me.

We moved my first treatment until Monday. They said they want me to be as healthy as possible before I start this. We will see about that. Maybe that's why they keeping me here to keep fluids in me.

Hope everyone is enjoying the beautiful weather! Thank you for the love & support!

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