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!