Update on Damon Givehand - Hospital Day 16

Hey Friends & Family, 
I hope you are each thriving in the best ways and that you are remembering to love on those you love. If the last 16 days has taught me anything, it has taught me that none of us are promised the future we envision for our lives and that TODAY is all we have. I've been practicing the art of being present with Damon as much as I can because this is the one thing I can control. 

I wish I had some really good news to share, but the last couple of days have been a lot to process. Here is a stream of good news:

Obviously we are opting for option 1 and doing everything in our power to get him stronger. 

Yesterday was a ROUGH day for us because it was filled with lots of information and options and a little bit of panic on my end. The day started with them telling us that he was moving to a different floor because a bed became available. We thought this as a GREAT piece of news...like he was graduating from the ICU because he was "better". Turned out they just needed his room specifically for a patient who has to be isolated and close to the nurse's station. He is getting treated for all the same things on this new floor and it does mean that he no longer has "critical" care needs from the hospital's standpoint. 

The panic was when the patient advocate came into the room to tell us we were being DISCHARGED from the hospital and sent home. He then proceeded to tell me about all of the equipment and supplies we are going to need at home. Talk about overwhelm!!!!

I FREAKED. 

Damon is NOT ready to be sent home. He's hooked up to so many machines and requires breathing treatments and a list of other around the clock things just to sustain. He can't sit, stand, walk, or move on his own because of the extreme atrophy. He requires help to lift his hands and legs. The tumor is so heavy and he is so weak that he can barely hold his head up without help. And while I have been watching everything they do and asking lots of questions along the way, no one has officially taught me how to care for his trachea or his feeding tube. They haven't shown me how to get him in and out of bed on my own. They haven't taught me how to start, stop, and set up his feeding bags. They haven't given me any instruction on how to suction his trachea and administer these breathing treatments. He has not had a speech pathology done to know if he can use the speaking valve on his trachea tube. The stroke care team has not talked with us...and on and on and on, so, yeah, I panicked. 

Turns out, that person had the wrong information and jumped the gun. But I spent a good 2 hours thinking they were about to send him home the next day. Even though that turned out not to be the case and he will be here definitely until Monday (if not longer), it does look like they are planning to release him sooner than I feel comfortable with so yesterday afternoon I started asking for instructions from the nurses. Now I'm not just watching to see what they are doing, I'm watching with the intention that I will be doing it and with the intention of learning. I've asked them to let me do it with their step by step guidance so they can course correct me if I make mistakes. 

HOLY HELL!!!! 

Yeah...this is where we are. 

And with all of that, we both remain hopeful, prayerful, and grateful and we ask you all to do the same. We are not giving up and we ask you not to give up on us either. Send good thoughts our way. Send love and light to the people working to get him/us to the next step. Continue to share your stories of resilience and perseverance with us, even if its not the same as our story any reminder of the power of the human spirit and strength can be helpful. 

We love y'all and are grateful for the way you have all rallied and surrounded us in the best ways in the worst times. THANK YOU. THANK YOU. THANK YOU. 

xo
Kiala