An Update from Brenna:
Greetings from LTAC at 3:00 a.m.: a great time to write a quick update. I am not a diplomat by intuition or gifting but spending a few years at the legislature, in committee meetings and judging debate rounds taught me some skills that have come in handy here and in the ICU. In fact, there were more politics in the ICU than I ever encountered during the legislative session!! (okay, maybe equivalent?)
Elijah seems more tired and on Wednesday he had a setback with a fever. The fevers most often are central fevers or brain fevers. The injury to the hypothalamus affects his ability to regulate body temp. The fevers are dangerous for Elijah because of secondary brain injury. Not all nurses see it our way, however. Therefore, on days like this I am immersed in the diplomatic role of playing Elijah’s mom/advocate/nurse (hence why I am wide awake at 3:00a.m.). For a few days we have been managing very well at 98/99. Yesterday, we had an up and down day between 100-102. I will spare you the politics. We bought a fan and use ice packs to help him regulate and of course some of his medicines function in that capacity.
We collect inch stones every day. Elijah loves therapy. Who wouldn’t when you compare it to laying in a hospital bed? He has won over his therapists and they are all so kind and always cheering him on, amazed at his progress. Today he sat at the edge of the bed for exercises in OT. Speech is working toward helping him get the trach out. He spent three hours with a passy muir (one–way speaking valve) attached to his trach, so for the first time in 33 days or so he has felt air come through his mouth and nose. With a passy muir the air comes in through his trach and out through his mouth. It is a bit of hard work and adjustment for him. He is strong. One day soon he will be using one all day and then they will be able to cap, and Lord willing, remove the trach!! I studied all of this in grad school but never imagined I would see it hitting so close to home.
Just like life before the accident, mornings are not his thing. This is evidenced by less alertness and more frequent meds. But hello afternoons! Since Monday he has been very active and alert. Yesterday he went four hours without narcotics and today five and a half hours! He also went four and a half this nighttime. Those are encouraging inch–stones.
Wednesday he was really trying to get some fine motor coordination in his left hand and I practiced having him “grab” something and then let go. The grabbing is a reflex but the letting go a motor skill and he is getting it. I couldn’t find anything very interesting in this hospital room to entice him to grab, but settled on my cell phone. Picture the very beginnings of this skill and that is where he is at. He doesn’t have very much arm movement at his command yet but is moving them more and more. He is turning his head often, tracking with his eyes and able to follow simple commands with some delay. The doctor on Tuesday was so excited to see all of his eye tracking and explained to me that neurologically there are so many layers of neural connections and cognition to make that work. He is very encouraged and called Craig to come for a bedside evaluation. There is an optimal time for him to go to rehab and only a limited amount of money per our insurance (60 days) so pray for God’s hand in the doors opening at just the right time. He needs to not waste recovery time here but be strong/alert enough to get the most out of their therapeutic regimen.
As his brain wakes up and begins to lay new pathways it seems that it is harder for him to sleep. So when he is awake he also seems more tired. He has all kinds of facial expressions but his lips have only puckered or pursed. I am waiting for him to smile. Waiting with patience, I might add.
Today (Thursday) we change shifts. Randy will come at 4 and I will be the mom at home. I am homesick for the kids and my other life but miss being here when I am gone. We both agree that when we are home we deal with more grief. We haven’t spent any time together in 33(?) days so that is different as well. We are so thankful for Evan and Heather (our oldest son and his wife) taking the time to come and be with us. We are used to a big family and so when they come it fills the empty – plus they are a real help!
As I walk the halls to get ice or see what the real weather is like (it is like the arctic in Elijah’s room), I am reminded of all of the people with struggles. Some of the folks here seem to have no one. I met one couple where the husband drives back and forth to Cheyenne everyday so he can spend the day with his beloved wife. He is doing alone at an older age what Randy and I tag team to do. So touching. Maybe the Lord will bring an opportunity for us to help some of these people. Surely there are people here who have not experienced the love of Jesus.
Thanks for all of the encouraging personal conversations, notes and texts about the blog posts. I am gifted to embrace creativity and have found writing as the Lord inspires to be very cathartic – so thanks for playing along with me. A writer needs a reader.
Thanks for reading, caring and laboring in prayer-
Brenna for all