May 20th - Day 94

May 20, 2021

Yesterday I took a day off and Erin spent the day with Brian. She said everything went well with his therapies. They were able to tilt him to 40 degrees on the tilt table - today they got him to 50 degrees.

I was able to meet with the doctors for the first time to discuss Brian's state and their plans (Monday we will have a thorough meeting with the full team and our family). I'll list the updates below, and ask for these specific things to be lifted up in prayer, as my anxiety always heightens with these types of convos...but our God knows the plans He has for Brian:

Brian's state of consciousness is considered 'unresponsive wakefulness,' formerly known as 'vegetative.' I haven't shared that directly before because it is really hard for me to cope with it.
They would like to see him progress through the stages of consciousness, which I've mentioned before. The next state would be called "minimally conscious" and would require him to be responsive to commands and track objects with his eyes. Potentially even attempting words.

As of late, I have considered him to be teetering between these two states as I've seen things progress & mild signs of improved tracking + the vocalizing, but that's not consistent enough yet.

Since he arrived, they have noticed improvements in his vitals, specifically his blood pressure toleration with physical therapy's attempt to stand him upright.
He arrived here on two neurostimulants, and the doctors say they have up to 6 more to try, and have found sometimes even the combination of them all will help fire neurons to emerge him. So in that sense, they still feel they have lots of tools in the tool kit to explore with his condition.
Electrotherapies are out of the question because his EEG from early March did show indications of seizures apparently - and sometimes electrotherapy can trigger seizures so they want to avoid that at all costs.
They had a minor setback capping his trach so to be safe, they wont start the process to remove it again until next week.

Right before the doctors came in, the custodian came in to clean Brian's room. She was beautiful and kind and we were making small talk (we are both turning 33 this summer), and then she turned to me and asked me if I pray over Brian every day. And I told her yes. And then she started to remind me of God's promises, told me that working on this floor of the hospital makes her feel heaviness, so she tries to spread love & joy to the patients and their families. She told me that we will experience delays, but the lessons we are learning are for the blessings. She reminded me not to hold bitterness or anger in my heart because "anger spoils the blessing." We talked for almost 20 minutes and I listened to her sweet words through my tears as she comforted me and assured me Brian would be okay.

As we were finishing our conversation, the doctor's came (and they were really nice) but it always makes me feel on edge to talk so black & white about his condition, when in reality the brain is a mystery. I thank GOD for the doctors & therapists here that believe in these interventions and have seen them work because it means we still have hope (another thing the custodian, Ashanti, reminded me of). In my head, I was perpetually asking God to give me strength to get through the doctor talk, and when they left, Ashanti returned. She said "they messed up her floor" but she wanted to come chat with me again (thank you God for sending me this literal angel on earth today). She re-mopped and told me that she can tell that I am strong, have a lot of love in my heart for Brian (her exact words were, 'I can tell that this man is your heart'), that I need to be strong for Brian while he is sleeping & healing, that God would not give me/us what we cannot handle, and that she sensed that God needed her to deliver these messages of hope to me today. That if the world would just start loving each other, talking to each other, and praying more often, it would be a better place.

Today, Ashanti was an unexpected answer to prayer I didn't anticipate. To have her verbal reminders of God's goodness in the moments just before and just after the doctor conversation was exactly God's closeness to me to give me what I needed to brave that 'alone.'

Right now, I'm asking for specific prayers for the timeline here. His tentative discharge date is June 12th - if he continues to show signs of emerging, they will extend it and keep him here. Please pray that the other neuostimulant medications prove to be successful! And that each day he shows them progress that's undeniable.

This verse has been popping up frequently for me the past couple of days:

"When the time is right, I the Lord will make it happen."
-Isaiah 60:22

Lord, we know you have a plan for this circumstance and for Brian's life. We have been patiently waiting in anticipation, it has felt both long and short. But God we ask now for you to emerge Brian to consciousness sooner than later. That your timing in rehab will prove itself to be perfect, so that he can awaken and continue recovery at this facility. Please, we ask that this is the right time, and that you will make it happen. Thank you for sending an army to rescue me/us when we are weak. Thank you for Ashanti and her boldness to share your truth with me when I needed it most today. We surrender Brian to your powerful healing hands. Please don't extend our suffering longer than we need or can handle. Give Brian's life great purpose & testimony and let us go home to share a life we both love. Amen.