First Few days @ Home

We are trying to adjust to our new life at home. I don't think I have ever been so busy in my entire life. I feel like I am running and running all of the time. According to the doctors, it is best that Erik has a very scheduled life. This seems to be very unlike Erik's personality, but just like mine. Everything he does takes an unbelievable amount of energy and then he gets to take a nap. Then I wake him up, give him drugs and do it all over again.

We had our first home visit with a physical therapist. Erik did a bunch of balance tests to find out the reason for his instability. The good news is, she thinks it is just strength issues, not an inner ear issue. This means a lot of hard work for Erik. He has homework to do squats and toe lifts 3x a day. Today we are going to get Erik a massage. I spoke with our Massage Therapist, Michelle Sheilds, and she will do the whole massage with Erik either lying on his back or his side. Hopefully she will be able to help with his back and neck pain.

As for Eriks pain, we seem to be managing it pretty well. He pretty much takes Tylenol throughout the day and takes 1/2 vicodin at night. He doesn't like taking the Vicodin during the day because it makes him feel loopy. The thing that is really driving him nuts is that hes cold ALL of the time. Our house is warmer than it ever has been and the poor guy is still shaking. In order for Erik to function, he has to wear an eye patch all of the time...otherwise he sees double vision. We have an appointment with a eye doctor that specializes in eye rehab in about a month..I guess he does some sort of eye exercises to get the eyes to re-align. We are doing some of this at home too, hopefully it will work and he wont have to have surgery.

We went to meet with the neurosurgeon on Wednesday. This was the guy that operated on Erik in the ER. He looked straight at Erik and told him...."I really want you to understand this. You are VERY lucky to be alive right now." This was a shock to Erik. He told me that it is one thing for friends and family to be telling him this, but a very different thing to hear it from a Brain Surgeon. We got some scary news at this visit too. Eriks eyes and nose are dripping several times throughout the day. It is a possibility that it is spinal fluid leaking out of his body. Erik is going to have a procedure to have a radioactive fluid shot into his back and a plug like thing in his nose to catch the leak. They are going to test to see if its snot, or spinal fluid. If it is spinal fluid, then he may need to have a shunt put in. The doctor did not tell us what a shunt was but I found a description on Wikipedia: (click here) http://en.wikipedia.org/wiki/Cerebral_shunt
He said that the fluid would be directed to a cavity near (in?) his stomach. I think that the test will happen within the month, but the time was not set up yet. This was the first time that we only had each other to lean on when hearing bad medical news. It was hard. I think that I came to the realization that the serious surgery's might not be done yet. I had talked myself into the idea that the plastic surgery was the last surgery. Well, what can we do. Take the next step and move forward. As we have been told many times - there is a long road ahead of us.

To end with good news, yesterday Erik put his kicks on and walked ALL around the coldasac. It was the farthest he has walked, and he did great. He was very tired when we got back inside and took a nap. So friends, Erik is being strong and working hard.