July 28th - Day???

I'm exhausted. Last week really has my nerves wrecked.

The ER experience was unacceptable, disgusting and negligent to say the VERY least. Something that was highly avoidable that almost cost Brian his life. In a nutshell, Brian experienced neurostorms throughout the course of 25hrs that became more severe and more frequent and the ER staff told me to 'calm down' and 'wait our turn' while they left him on an ER cart. They did not tend to his needs as a minimally conscious patient. They did not replenish his meds or fluids when his g-tube leaked twice. They did not rotate or turn his body unless I asked. They cancelled his order for nutrition when I left to catch a couple hours of sleep. They dropped the suction piece on the floor several times and still attempted to use it in his mouth (I did not let that happen). 

When Brian was finally admitted, he was near critical (heart rate 180, temperature 104, sweating/bright red, postured, pupils blown, gasping for air). And even at that level of visibly critical, patient care techs did nothing. We had to beg for the urgent care team. Within seconds, 15 people were in the room. Four rounds of morphine later, his heart rate was still extremely high, but they started to see hope in his body's response and saved his life. We stayed with him until they kicked us out at midnight while he perpetually, severely stormed. If you read articles about this and see it says that this is more difficult for the family than the patient to experience -- that's wholeheartedly true. 

But he stabilized. And so we move forward.

I expected to be in the hospital for weeks, but as of Monday afternoon, we are back at the rehab hospital (praise the Lord). Brian is bouncing back slowly but surely. And we are praying that the neurostorming is an indication of increased consciousness (asking desperately, more like).

I celebrated my first birthday since meeting Brian, without him. I couldn't be with him on readmission day because of the covid test. So I spent the day with family and some best friends that forced me to eat good food, swim a little, and enjoy some wine. And my goodness did I feel the love from near and far by way of calls, texts, messages, and little sneaky care packages (special shoutout to Giuliana, the sweetest little girl of all time that made her parents drive all the way to the city to give me a hug & some very special birthday treats!! )

I tried hard to allow myself feel the love, because I know for sure Brian would want me to. But Brian is a birthday king, so it was hard to not think about what he might have had up his sleeve this year.  Surely it would have involved some Superman ice cream though. To everyone that went out of your way to make me feel special Monday, please know Brian would be SO thankful. I know when he wakes up he will be beyond appreciative that I was taken care of. <3

As for today and the days ahead, we keep the hope and faith that Brian's continuing on his healing journey. I have to cling to the tiny victories to keep going these days. So our tiny victory yesterday was: speech therapy was able to get a spoon entirely in his mouth, on his tongue!  He hasn't ever been relaxed enough in his jaw to allow anything to touch his tongue fully - so we will take it!! 

Thank you for everyone lifting us up in prayer and for the seemingly endless amount of support. I don't have words to convey what it actually means to me.

--

Side note:

If anyone knows of any month-to-month condo rentals in Streeterville that might be able to house me, Layla and my brother - let me know. We're needing to find a place ASAP (like Aug 1st). Ideally, furnished & dog friendly.