Sunday, September 4, 2011

Sunday

I am still very tired and not feeling so well.  It does concern me but I am hoping that the being so busy the last three days is still having an affect. 

The flight Thursday went well.  Getting to the hotel from the airport was rather crazy because of a big car race being held in Baltimore.  Friday we left the hotel at 6:40 am in anticipation of traffic issues since the first car race started at 8:00.  However, we were able to get to Johns Hopkins shortly after 7:00.  We waited for the doctor for 2.5 hours because of an emergency surgery.  To make a long story short, I had three times I was sent down for x-rays to check the status of my shunt and one ct scan so they could compare my ventricles now to how they had looked when I was there in June plus blood tests.  Since my ventricles are still incredibly small they felt that the best choice would be to continue increasing the pressure in my head.  I was impressed, though, that the doctor listened to me and saw me three times in between the tests.  He didn't just ignore what I said but checked things out before making a final decision.  He is very knowledgeable and kind.  Very refreshing.  We didn't get back to the hotel until about 2:30. 

I asked about my seeming inability to regain strength and in his Italian accent to told me that when the pressure in your head is off, you will feel like you are "crashing."  I asked for some clarification and he said that I will just be very tired and unable to gain strength until we find just the right setting.  It is reassuring that he feels that we will get there, but rather frustrating in the meantime when I am not growing in strength like it seems I should.

The flights yesterday were interesting.  The first was fine, but flying out of Minneapolis a little different.  We took off and about 15 minutes into the flight we were told that we were turning around and going back to Minneapolis because there was something wrong with the plane.  They felt that it would be unsafe to continue.  After landing, we and the airline weren't sure how we would get home but after about an hour they found a new plane for us and we were flown back.  Huge relief.  We suspected that we would be staying overnight in Minneapolis and flying out the next day because the flight was not at all full.  It was so good to get home!

I am quite exhausted yet and not feeling so good.  The jury is still out as to whether the adjustment was made in the right direction.  I had hoped that after a good nap today that I would be feeling better and that is not the case.  Hopefully because it was just so busy the last days with flying out, spending a big day at JH and flying back but as the day progresses I am becoming more concerned.  I really wish there was such a thing as a head transplant!  :)

Isaiah 40:31
But they that wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
They shall run and not be weary;
they shall walk and not faint.

1 comment:

KPhilipsen said...

Thank you for the updates, Cindy. You are often in our thoughts and prayers. We are so glad you have found an understanding and sympathetic doctor, and we will pray with you that this shunt setting is correct.