Thursday

I am back online!!  Thank you so much for all the comments and other ways that you have all supported my family and I through prayers, visits and so many other things!  As I've said, knowing people care means so very much to all of us!

Well, Kyle visited for a bit this afternoon-an extended lunch break. 
This morning I continued to have a strong headache.  The neurosurgeon wanted to wait through the weekend before opening the shunt to see how I would respond.  After much thought, prayer and talking with family we decided to have it opened late this morning.  That is what it took and I am now feeling so well that I don't feel like I really belong in a hospital (if it weren't for the things connecting me to an iv pole, that is). 

This has been hugely difficult and yesterday my head really hurt and I was overwhelmed with frustration.  First, we don't know what caused the intense pain in my abdomen because the cultures came back negative and are finalized.  That being said the doctors in Baltimore told us that an infection in the shunt can take 5-7 days to show up--evidently they can be a little more difficult to find & diagnose.  So we won't know the answer to this and it begs the question of whether we did the right thing.  I have decided not to let myself go there anymore because we made the best decision that we could at the time and I am leaving it at that.

The shunt has been a very difficult thing as well.  The neurosurgeon here is quite kindly but firmly insistant that I do not need the shunt.  He would like to pull it all out and have me done with it.  That sounds wonderful and I would so like to be done with the shunt!  Putting it in the history book for me would be just amazingly wonderful.  However, without the shunt I have a headache that makes functioning difficult if not impossible.  Clinically, it does not make sense that I have the pseudotumor cerebri.  But I just can't live with the headache that the shunt at the right setting so far has been able to control, not perfectly, but much better than I can live without.  So we finally called it quits to the experiment of living without the shunt by having it shut off (possible only when externalized) and I am feeling amazingly good!  I continue to question myself, wondering if it could be psychological.  Am I thinking myself into a headache?  But it just can't be.  For example, today I really didn't expect to have any relief until this evening but I started feeling gradually better already about 1.5 hours after it was opened.  Now I feel like a new woman!

So it has been a difficult walk with difficult decisions.  Making a decision that is contrary to the decision of a neurosurgeon is not something to take lightly and it really has been hard for me.  I am the type of person that likes to obey the rules and do what I am told.  If I could find a way to live without it, I would very quickly!

The primary reason they would like to pull the shunts out is because they are problematic generally and have been very problematic with me.  If my calculations are correct, I have had 12 surgeries (with another coming in the next week) in the last 4 years, one being chiari surgery and the rest are in one way or another shunt related.  Not cool and definitely makes having a shunt sobering for me.  So very heavy decisions and heartrending for me to trust that we are making the right decision again.

Well,  this has become a book and I am pouring out perhaps more emotion than I should.  This is such a healing way for me to deal with all of this by writing and expressing how I am feeling!  I continue to rest in the Lord, though, and trust Him.  He is providing in so many ways so I continue to have many things to be thankful for in this difficult situation.