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.

Tuesday, April 10, 2007

Do NOT poke the sleeping bear...

Sunday we had 3 hard epidsodes of Ellie fighting and having to be restrained, one with 7 people restraining her and one with 5 people restraining her. As mentioned in “Kisses for Daddy”, the Central Line was taken out of Ellie’s chest around 1:30 PM and a new one placed successfully in her right groin. They had to use anesthesia and a paralytic drug to accomplish these tasks and they were done by 2:30. Ellie then stayed asleep or knocked out until around 5:30 PM. However, the vigilance of her is never ceasing. It only takes one cough or shift of position to preclude a full blown episode. Whoever is watching Ellie needs to be at her side the moment movement starts in order to prevent a tube from being pulled or escalation into a kicking, fight mode. We have even had to resort to placing restraints on each wrist, but the clever girl simply bends her head forward or slides down in the bed to get her hands closer to her face!

We made it through Sunday night/Monday morning hours with sedation that appeared to work to bring Ellie physical rest. She is still very lucid and answers questions when she opens her eyes. Monday was fully involved in testing Ellie’s ability to breathe over the ventilator successfully, draining the fluids from her lung cavity, and keeping the right mix of medications to keep her sedated but not bottom her vitals out. She has been running a fever pretty steadily since Sunday in the early morning hours. Noon yesterday, the doctors came in and said they didn’t like the way one lung looked and that they would like to hold off on extubation for another day or two. This morning we were told that they are pleased with the progress of her lung, so we are hoping for extubation tomorrow.

We were blessed for 3 days and 3 nights to have the same nurses and a rhythm in Ellie’s care. Each shift change that brings new staff feels like we have to start over – maintaining continuity of care is exhausting. Each person who has come into contact with Ellie - doctors and nurses alike - have been kind and competent, but it does take a lot of energy to impart all of the details that we know work for her (particularly regarding sedation). We have been the only constant in Ellie's care over this past 13 days in the ICU, given the high turnover of personnel.

To illustrate this point...

Our nurse yesterday was new to us, and she was loving and enthusiastic in her care for Ellie. We had been giving clues along the way to her about how touchy Ellie can be, but when Ellie finally blinked and opened her eyes, that sweet nurse got right in her face and brightly said "Hi Ellie! No, no, don't close your eyes - I want to talk to you! I'm taking care of you today. How are you doing?" I looked up at Belinda who was standing next to the bed, feet firmly planted, with both hands ready to pin Ellie's legs and arms should the need arise, and watched the color drain from her face. She looked back at me with big eyes while I helplessly observed the exchange between the nurse and Ellie. My mind was racing as I tried to figure out how to respectfully explain that we do NOT want to try to engage Ellie's mind right now. And then she said "Look! There's your mommy and aunt B over there! Do you want to see them?" By then I think I was starting to shake all over, but I moved over to Ellie's head and started stroking her forhead and gently tried to put her back to sleep. (Another piece of the puzzle is that I seem to stimulate Ellie's need to communicate, so I've been staying aloof and have been interacting very little with Ellie.) Belinda and I were able to keep her calm and get her settled without incident. I finally grabbed my cell phone and ran out to call Loretta. When she commented that "you NEVER poke a sleeping bear", I came undone and together we howled with laughter.

By evening I had a good understanding of the fact that anyone new to Ellie's care would not be able to fully grasp how traumatic her epsiodes are, so I was armed and ready for the night nurse. Now unbeknownst to me, that gentle soul had already heard the horror stories from other nurses. Between that and my "preparation" she became bent on giving extra sedation any time Ellie so much as wiggled! And so the night became a struggle not to over medicate...

And now with the light of day, our happy nurse from yesterday is back and I actually came close to begging her for more sedation when she suggested reading or singing to Ellie since her eyes were open and she was calm! She was ready to lower the bed and pull up a chair for me to sit in to hold Ellie's hand. Within not very many minutes, Ellie was sliding down in the bed, kicking both feet and biting the ventilation tube. Needless to say, I didn't end up having to beg for drugs.

And so, this time of supposed sedation for Ellie is not exactly relaxing, but as with every other point in this journey God has given grace in the moment. And thankfully He has preserved our senses of humor. I figure sometimes, if I couldn't laugh I'd be crying... and I much prefer laughing. Thus some very interesting late night hysterics over the instant message with Loretta or phone calls that turn into all out fits of giggles. What can I say? It keeps me sane!


At 11:57 AM, Anonymous Anonymous said...

I'm so glad you're laughing, Sarah! It feels good, doesn't it!?! :-) We continue to pray for you and carry you with us all the way! Blessings! Carla

At 12:01 PM, Anonymous Mema T (Edith) said...

I remember once when a friend's husband was critical that laughter is what kept us sane. It didn't appear that way to others I am sure. But I am so thankful that God has a sense of humor and pours it into us when we need it. So laugh when you can and even dance if you get the chance.
A kid's song: I've got the joy, joy,joy,joy down in my heart (WHERE) down in my heart, down in my heart to stay.
God is the joy of your salvation! We are praying daily and trust God for His will to be done in Ellie's and your family's lives. Edith in SC.

At 12:16 PM, Blogger mcovington1 said...

We continue to pray for God's "peace that defies understanding" in this rough situation! Thank you for the update. "And the God of peace will be with you" Phil 4:9

I would have to add that you definitely do not poke a sleeping bear with momma bear standing nearby!
Mollie Covington, Doylestown PA

At 1:43 PM, Anonymous Anonymous said...

You have such a kind attitude toward the nurses who don't heed your words of understanding and experience - just be sure to speak right up boldly if they are going in the wrong direction. You are both Ellie's voice and her defense system. Ellie is the "sleeping bear" but you are definitely the "mama bear!"

Ellie is remaining strong and determined. Fight on team! The love and prayers continue to pour out on your behalf!

At 1:43 PM, Blogger Jeff Roberts said...

I can relate to the shift change stories, just from my daughter having been in the hospital with pneumonia a couple of times. That brain dump can be excruciating when you're already worn out.

I still have in my PDA the antibiotic that doesn't work for her, the one that made her throw up for 3 days, and the one they finally gave her that worked without irritating her stomach.

We'll be praying they find a medication that will help her rest. Her episodes must wear everyone out...but it sounds like there's tons 'o fight left in her!

At 5:16 PM, Anonymous Diana said...

Dear Sarah, John, Ellie, Belinda, and Loretta.
We are praying for you continuously. Sarah God is using Ellie in our lives to bring us closer to him. Ellie is a blessing! Earl(8) and Rebekah(6) love her so much. Ellie many times asked to play with Rebekah. And one day they spent an awesome time together. My daughter calls Ellie her best friend. They know of each other so little yet they know so much of each other as well. They are little kids, innocent and sweet. I just wanted you to know that Ellie means a lot in the lives of my children. Praying for you everyday.

At 12:05 AM, Blogger c.g. said...

Do NOT poke the sleeping bear..

a favorite quote from
Erma Bombeck:

"Laughter rises out of tragedy, when you need it the most, and rewards you for your courage."

continuing to pray for each of you.

At 3:11 AM, Anonymous oneofhisfriends said...

Dear John and Sarah,

Thinking on the 23rd Psalm this morning, I was reminded of a January posting which revealed your daughters good grasp on life.

Psalm 23

The LORD is my shepherd; I shall not want.

He maketh me to lie down in green pastures: he leadeth me beside the still waters.

He restoreth my soul: he leadeth me in the paths of righteousness for his name' sake.

Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.

Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.

We're never, never, never alone.

Now praying for the night shift.

At 8:31 AM, Anonymous Anonymous said...

they say laughter is the best medicine. we continue to pray and lift you all up to the Lord. love the simons family


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