"He shall feed his flock like a shepherd: he shall gather the lambs with his arm,
and carry them close to his heart, and shall gently lead those that are with young." Isaiah 40:11

Saturday, February 5, 2011

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. 


Sharon said...

I'm crying too. I can't imagine that level of exhaustion. This has been more than a year of strain on your body and mentally/emotionally. Praying for relief and comfort for you.

Jobina said...

My Dad is an anesthetist and has told me that patients LOVE fentanyl. I hope it works well for Rachel and quicker than the morphine.
Lifting you guys up in prayer today!

Anonymous said...

Oh dear Lord, I know you see our tears for your beautiful children: Dave, Kendra, Rachel, Ethan and Abigail. Lift them on wings of eagles, hold them in the palm of your hand, give them the peace that passes understanding, give them rest, deep sweet full rest that restores body, mind and soul for the journey. Go before them, behind them and all around them. Have people around them to meet all of their body and heart needs. Fill their souls with your mercy, grace and peace. Protect little Rachel and her whole family in the way you alone know. God, please have mercy.

Jaclyn said...

My heart hurts for you all. I'm praying that God may grant you a beautiful peaceful sleep!!

fiona said...

yesterday i went for a jog in the late afternoon and prayed lots for you all . . . as i was on my way back, the sun was low in the sky but shining brilliantly. i ran across the maryland bridge and the light of the low sun on the trees along the river bank was stunning! then, i looked up at the cross on the top of the misercordia hospital and saw it shine like gold. i witnessed all this while i was fervently asking God to spare you and dave from watching rachel suffer any more . . . it was a very beautiful and powerful reminder of God's amazing love and power. i spent a lot of time lifting you all into the light of God's presence and asking Him to hold you all in His arms in the presence of that unsurpassing light and love. the glory of that sunlight on the cross was an amazing picture to me of how God is able to make the light overcome the darkness. may it be so Lord Jesus!!

Carol Taves said...

My heart just aches for all of you. May God hear your cries and be merciful to you all.
Kendra, I don't know when you'll find the time, but have you considered going to see your doctor about the anxiety/lack of sleep issues? You have been very strong for a long time, but sometimes our bodies and subconscious don't handle all the stress as well as we think they are. Take care of yourself and cry as much as you need to. I am crying with you.

Anonymous said...

Continuing prayer for all of you. It is a hard place to be, but, He's with you.

I'm praying thru Song of Solomon for you - May He give His beloved rest.

QueenB said...

I pray to the Lord for rest and strength for you all, and for His tender care upon your precious children.

Janet said...

Rachel you are an amazing little trooper.Wow!
Dear Jesus,Give our dear friend Kendra the sleep she needs.Give this precious family that you love so much, strength & comfort that will rest upon their hearts.Jesus take away any anxiety that may rise up & fill it with your peace.
We love you all. :)
Much love & prayers
Janet M

Anonymous said...

I agree with Carol...please take care of yourself....praying...L-lew

Valerie Ruth said...

you say you're having anxiety without a source... i would say you have a source. a very valid one. hang in there sis.