We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Saturday, April 07, 2007

My daughter, the BORG...

For those of you who know nothing about Star Trek, pardon the reference, but for those of you who do... this will make total sense.

Ellie seems to be adapting somehow to the drugs - at least that's the only real explanation that is making sense right now because that little tiny girl will NOT BE SEDATED! Ellie is regularly, around the clock being hit with three heavy duty sedation drugs and she will still push up through the fog periodically to kick and fight, wiggle her nose (because of the tape under her nose holding down the tube that comes out of each nostril) and try to rip the tube out of her throat. It will take three adults to hold her down while the nurse administers MORE drugs just to stop her struggling. (This process, on average, takes an hour.) We were worried that one of the drugs was having an opposite, stimulating reaction, so Ellie is being weaned from that one slowly (apparently stopping cold turkey would be horrible). She is being given a new drug to see if it will throw her off for a while before she adapts to that. She is also being given something to help her deal with the withdrawals that will occur when she is extubated and taken off all of the sedation drugs.

And now tonight she has started back on two of the three antiobiotics that she spent 12 days on because she spiked a fever. All tubes as well as Ellie's blood are being checked for infection. If she spikes a fever tonight again they will remove her new central line (the one that was placed when her Broviac was removed - the one that caused all of the internal bleeding over a week ago). Basically, this is the exact same place where we were two weeks ago... hoping that the fever stays down and that she won't become septic... again.

John relieved Belinda and me tonight, with plans that after a short break Belinda would join him back at the hospital. We had only been in home for about half an hour when B got the call to hurry back - Ellie was in a full blown episode. I know that John is starting to feel as I did - that it is all just too terrible for words. There is something so sickening about having to hold your child down, all the while trying not to hurt her while she is so scared and confused - and nothing you do or say can really help at all. You tell yourself that it is what you have to do to keep her from hurting herself in a big way, but nothing makes it feel ok. And then once she is finally "asleep" you are afraid to touch her or even breathe on her for fear of her eyes opening up again. I have never been afraid to touch my own child... EVER... until now.

I'm sorry to give such a depressing sounding update. It has been difficult and frustrating at times. We have about 24 hours of this before they take her off of sedation and begin an anesthesia drug that can only be used short term, until they are ready to extubate on Monday. As always, it is so overwhelming to look at this as a whole and try to predict the coming days, but in the moment when we need it, the grace of God has been there... and will continue to be there. As I was finishing this entry, I received word from Loretta that it has taken 7 people holding her down plus an anesthesia drug to finally stop Ellie's fighting tonight... well I guess it's not tonight anymore - it's almost 1:30 a.m. Thank you all for your constant love and prayers - and please pray that tomorrow Ellie will have more peaceful rest. Thank you so much!

6 Comments:

At 12:48 AM, Blogger c.g. said...

Sarah,

I'm so sorry to read this latest news. Will pray as you requested.


From scenes of conflict, burden, grief and care,
To Thy blest presence, Lord, we now repair;

Thy shadow here provides a calm retreat,
Where sympathies divine our frailty meet.

To Thee the cause of every sigh is known,
Thou who dost feel the sorrows of Thine own;
Unspoken fears and questions hard to solve,
Before the rays of heav'nly light dissolve.
Thy well-proved love our confidence inspires
To count upon the grace that never tires.

"The Lord is nigh unto them that are of a broken heart.."

wrapping you in the arms of prayer.

 
At 1:37 AM, Anonymous Anonymous said...

John, Sarah & team
Just a thought to encourage you.
When the nights are long and hard, remember that there are people in other parts of the world in daylight and are praying for you right then.
Love & Prayers,
Hazel

 
At 1:44 AM, Anonymous Dtd said...

Good morning Sarah, John and Team Ellie,

Easter Blessings to all of you, especially that wonderful little girl of yours.

Checking the internet at 3:00 AM on Easter morning is not something I ever thought I would do; however, checking to see how Ellie and all of you are doing is an essential part of our family routine, regardless of the hour or day.

God's miracles surround Ellie every day. Do you have any idea how the faith that all of you have as a family and the love that all of you hold for God touches our lives? Our human hearts break for Ellie and for all of you; but through your testimony, courage and unwavering faith, our understanding of true Christianity has been strengthened. We have your faith filled lives to guide us and teach us that pain, fear and grief are not reasons to question or walk away from God, but are reasons to walk to God and walk closer to God.

Thank you for allowing us come to know and love your Ellie.....God's Ellie.

Love to all of you - imagine getting big, big hugs and forehead kisses right around now.

Bless you all,

The Dannettelle Family

 
At 3:18 AM, Anonymous oneofhisfriends said...

Hi Team,

The LORD liveth; and blessed be my rock; and let the God of my salvation be exalted.

Psalm 18:46

He is risen!

 
At 7:17 AM, Blogger tricia said...

I told you she was a strong little girl! Love the BORG referemce.
Brewier and I were talking about what a neverending blur this must be for you and John...kind of surreal, and we are continuing to pray for all of you. Love you, Tricia

 
At 8:29 AM, Anonymous Anonymous said...

As part of the body of Christ we share in all you are going through. We have cried and laughed with you in "Ellie's journey". Our hearts hurt to have to hear all that you all are going through right now... yet, thank you for keeping us updated, we will continue to battle with you on our knees.

Remember our Heavenly Father has no problems, only plans...

Love and Prayers from Thailand

 

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