Rachel's Spell and Other Things

wow - thank-you for your notes.  Rachel is doing just fine. (She bounced back amazingly well) I do not feel fine though.  Yesterday I managed finally to fall asleep for a nap in the afternoon and I woke up a short time later, to a 'flurry of decision making' and most of it was going on around me.  Which was incredibly aggravating and frustrating to me.... but at the same time, I felt a bit relieved because I was so incapable of making them myself.  Dave took me to my 'Hospital' last night...meaning the Flames House.  Rachel and I have been here since supper last night. The hopes were that I could relax more and be able to finally sleep. I decided to try a herbal sleep aid one more time....I don't know why I have been so resistant to drugs...silly stubborness I guess...but again, it took me hours to get into a restless sleep.  

I am starting to have anxious spells.  I guess I am feeling like a bit of a mess right now.  The nights before Rachel's spells I was having terrible dreams.  One night I was certain that I could hear Patricia (our respite) screaming downstairs and I ran to the door expecting her to run up and tell us Rachel was dead.  I have dreamt that Rachel died in my arms on the airplane and the people around me didn't know what to do with me.  (We have been talking of taking Rachel to MB - I would fly with her and Dave would drive with the older two.)  The reality is that I have been so excited about the possibility of taking Rachel to MB - I had just told three of my friends about it the day before Rachel's spell.  I know in my head that the likelihood of this happening is so small.  But in my sleep, the fear takes over. 

ok - so what happened the night before last with Rachel?  I had just gotten to sleep - maybe half an hour into sleep - when Patricia brought Rachel upstairs.  Rachel had just woken up with a spell.  It lasted at least half an hour.  And there are no words to describe our agony in watching her go through these.  The morphine didn't seem to be working.  We wondered if this was it.  I was even wording her death announcement in my head - unbelievable - even in a situation like this - I am planning...Our doctor told us later that she felt too that this might be the end.  She thought she might be coming to our home to confirm a death. 

Dave was wonderful.  He talked to Rachel the whole time to let her hear his voice.  I was busy trying to 'do' things - get her into the right position etc...We are a team that way.  Sometimes I want him to be like me and think of details like I do...but I know we both love her deeply.  

ok - now i'm crying...and I think I need to cry.  I haven't really cried since that night.  

I even called my mom at 2:45am....and I knew she needed her sleep - she had just had a crazy trip back from the States where they had done MDS work - and had to spend 11 hours in the van waiting out a storm...But I needed her.

And suddenly Rachel's ragged gasping changed, almost immediately her breathing regulated.  

Of course, how to sleep after something like that?

I am so worn.  

Thank-you - Thank-you for caring and for praying for us.

Rachel really is doing fine - the little trooper.  We were amazed at the smiles we got the next day - and this usually doesn't happen for a long time after a spell.

oh yes, we are going to try a new drug called fentanyl. (instead of the morphene) It is suppossed to act faster.  The drug itself is not new - it is used for pain and patients who have pain and breathing difficulties say that it helps for both.  The method of delivery is fairly new - it is a tiny drop in the nose.  We are going to get some training today on that.

Also, because of my need for rest (for mind and body)  - I am trying to spend far less time on the computer so if I am not answering emails etc...this is why.  I know you understand.