One day at a time

  I had planned to start from the beginning so it's not confusing. I had planned to go back to my journal, notes, facebook posts, etc. But, the simple facts are that this roller coaster never stops and the longer I try, the more time passes and nothing gets done. So, chaos it is. But chaos fits, because the last 4 weeks of our lives have been nothing but constant chaos with only a few sane breaks that do not last long. 

44 days ago I came down with covid. 

30 days ago I was hospitalized with pneumonia for 3 days

33 days ago Scott came down with covid

24 days ago Scott was hospitalized with pneumonia

And we are still here. We've been from St John Broken Arrow, to St John Main 8 west, to floor 9, to ICU and we've been in ICU for 8 days now. 

He's had complication after complication. Pneumomediastinum, pneumomediathorax, Hypertrophic Cardiomyopathy, Platelets stopped being produced and dropped to 30,000, Severe Complicated ARDS, Cavitary Lesion, Anxiety through the ROOF, Possible HIT which they now think is negative, etc. 

We've had twice where they told us he was not going to make it more than 48 hours, once they called in the boys to say their goodbyes. More times than I can count having to fight them not to put him on a ventilator, several cases of medical neglect, several times of staff putting him into a decline/set back due to aggressive following of protocol without knowing how fragile his lungs are. 

I've had to go from only visiting 2 hours a day to up here 24/7 to make sure noone accidentally kills him or they do not decide drastic measures on their own accord just to "let his body rest". 

Last night he had alot of pain shooting through his chest and behind peck which then caused his anxiety to go nuts. He wasn't recovering on the high flow oxygen so they decided to put him on the bipap again. When he got on the bipap his anxiety was so through the roof he could not relax on it and was fighting it. I literally was trying to hold him down and calm him while I watched him turn blue in the ear and face. They nearly coded him. 

They decided he wasn't tolerating bipap so to try high flow again and it worked. They'd also maxed him out on pain and anti anxiety drugs so about the same time everything hit while trying to get him to breath. After calming he tolerated bipap for a short time until the pain hit again and they had to give more pain meds. Currently he's sedated with enough meds to tranquilize a small horse but there's no pain and no coding. Also no answers and no plans on how to fix the root cause rather than band aiding it. 

So when the ICU Dr came in today and I'm asking about root causes and how to find out what is causing his pain and how to fix it his answer was two fold. One, speak with the pulmonologist and two...we take it one day at a time. 

Currently his prognosis has dropped again and does not look as hopeful. They don't know what's going to happen to him, whether he will make it or not.  

We are stuck in the waiting. Waiting to see what happens with his body. Waiting to see if the pain resolves itself. Waiting to see if he's going to require drastic measures, etc. 

I'm also frustrated on top of all this that Scott keeps fighting me now. Whereas before he was looking to me for comfort, now he gets upset at me and the staff are thinking I'm worsening the situation rather than helping by being here. Not only am I about to go crazy being here but I'm exhausting myself BEYOND measure, beyond my own capabilities, and then he's mad because I'm trying to calm him and keeps saying it's NOT anxiety. Keeps saying there's nothing he can do and basically wants me to stop in that moment. I don't know how to help him like that. 

One day at a time is not a comfort to me. It's terrifying. It means at any moment things may turn for the worst. It means we aren't sure what's going to happen or if he'll survive. It means we may not see progress because of how long it's been without.