I heard there is supposed to be a significant storm headed this way tonight. I can hardly wait for the winds of change. Better yet, I'd like the four winds to blow us safely home. 

It's been a bit of rollercoaster since I last wrote. The first weeks of April, Britt was consistently getting in a chair each day, a few trips outside, and with the help of a "sit-to-stand" machine he stood up for the first time.  He was standing with assistance for 1 minute at a time for 3 rounds. I am reminded daily of how much I take for granted- I am able to get out of bed and simply stand up albeit with a fair amount of creaks these days. It has taken 6 months for Britt to relearn to initiate getting up. To me, he is and always has been a legend. 

He had been doing well with his trach capped and only removing it for breathing treatments and when needed to clear secretions. As he able to tolerate more time without needing the cap removed his pulmonologists can begin to consider next steps toward (God willing) eventual trach removal- downsizing the diameter of his trach and keeping him capped for 24 hours a day for 7 days straight. Britt tried to shoot for the 24 hour mark early this week but his body is not ready. He experienced respiratory distress, throat irritation from breathing treatments, and utter exhaustion- which causes all sorts of other problems. He stops eating and drinking because his throat hurts, he has more exhaustion but gets less sleep at night. Then his sleeping medication increases and he is too exhausted to do PT. Without PT and getting out of bed his lungs don't expand which is no good. When he has shortness of breath, he isn't getting rid of the CO2.  A true spiral effect... 

Today I noticed he was completely out of it, not unlike the day he went back on the ventilator. He could barely speak, open his eyes, and his breathing was shallow. A blood test revealed a high level of CO2. He did not go back on a ventilator but for tonight he is uncapped to help him shed the CO2 overnight. He was looking a little better this evening, regaining awareness, and when I left his CO2 level had begun to decrease. 

I feel a little numb tonight. His ventilator setback last month prepared me for today. His body is on it's own schedule. A lot of peaks and valleys-more than I could have imagined, surely more to come. A few days ago he told me that he felt like his body was turning against him. I can't shake those words. But those words help me to understand what a bad day feels like for him. It's like no valley in life I've experienced. Mercy. I'm praying that tomorrow he is feeling better. 

"Pray to God, but row towards shore." I read this the other day and and it certainly resonates with me as a rower of boats. So I pray and row to shore -and I'll add the importance of rowing toward where you WANT to go.  Rowing to shore is the act of always looking and planning for next best move, the next opportunity, the next facility. I visited some neurorehabilition facilities yesterday but having a  trach rules out the majority of options. I admit to having felt defeated plenty of times but I usually get some sort of a sign to remember to keep the chin up- ironically, I find these signs on the ground...  I think there are a lot of angels surrounding us, 2 new ones this week😔,  a lot of spirit and magic.  I find A LOT of pennies (Britt's mom's name was Penny) and pieces of paper with Paul Simon lyrics about "Jiggering it and figuring it", poems about West Texas roads on the beach in Chicago.  I've found pesos, euros, aces, wooden nickels, crystals and it's hard not to feel like they are signs and omens-and I save all of these findings. My ziplock bags of HOPE. 

I've sat in the Rothko Chapel in Houston a few times this week to put up prayers, to pause, to restore blind faith in this journey. Hope, faith, and love help to overcome a poor state of mind. The only state Britt and I have resided in for the past 7 months is the constant state of uncertainty. An exhausting place with exorbitant taxes. My yelp review for this state is not favorable. I know we'll get back on track again. I honestly have not a clue what the next best move is but I'm not about quit exploring every option.  

Without the love of so many uplifting and supportive people in our life... I don't know and cannot imagine how our life would feel. Even as I'm wrapping up this post- friends and family are checking in. Not a day goes by that we don't need you. Thank you all for opening your hearts and taking time to listen, for being available to break wide open, to be vulnerable, to be weak, to be hurt, to grieve, to acknowledge how painful, sick and twisted this chapter of life is. And to laugh again, feel some joy,  and get back to that place of deep gratitude. To have thanksgiving once again for all that we have and all that we don't. 

⚓️🙏🏼❤️LOVE, H

UPDATE: 6:00 am

I received a call early this morning and learned Britt was put back on a ventilator overnight.  💔