For those that follow my blog, you notice I took my social media cleanse to total silence half way through, which ultimately was interrupted by a hospital visit. Well, I'm back. :)
As I'm slowly easing back into a routine, that I loose even with such a short hospital visit; I am slowly clearing the hospital/sleep deprived/anxious fog. I want to start this blog with some gratitude:
1. Steve didn't want to go to the hospital, but after a full night and morning of this anxiety/breathing stuff he decided it was time to go. He didn't have to change his mind, but I'm so thankful he did. We were able to get a lot done in the hospital, that helped ease my mind of a lot of unknown. It's a beautiful blessing to me and all who get to witness his journey the determination he shows, while showing up with love and kindness and a smile through it all.
2. On this same topic, the hospital staff all understand Steve's wishes to be home, and they hustled. If you follow facebook you saw all he had done, but here is a list for those who want to know. Trache change, discovering a collapsed right lobe in lung (chronic pneumonia & ALS), vent setting changes, bronchoscopy, picc line change, cultures on everything (literally), discovering new infections, removal of ingrown infected toenail, wound care, ultra sounds, new foley catheter, list of new orders to make life easier at home, & a blood transfusion. Also, they never give up on us, no matter how many complications we add to the list they are always willing to work through everything with us.
3. My in laws for all their help the past month or so. Lots has been happening that requires a load of extra help. When our list of people to call on becomes less and less, despite them being in their 70s are there at the drop of a hat to help me with Steve. Often days, when I have NO one else. Literally.
4. Our home health team (pharmacy, nursing, aid, & respiratory): ya'll always ride the waves with us. We couldn't do this journey with out you.
5. Wrap it up with a thank you to those who step up when we are sinking. Without hesitation or excuses you come to our aide. There's too many to list, but you know who you are.
As I continue to get Steve and I settled, and we incorporate some new things into our routine, my main focus will be researching ways to rid these infections. What once was a colonized lung infection has started spreading to multiple areas. Is it alarming? Of course. I won't sugar coat it. There were no words needed in the hospital as the cultures began growing more and more, everyone's faces read what they needed to say. No one wants to see Steve have more battle added to his list. It's just a lot, and it's hard.
So yes I am feeling that reality, but I will not give up hope. Just as Steve is still doing his best to live life on his terms, as he's shining that light from within; I will do my best to help ease some of the burden on his body. As a caregiver, I used to feel the need to defend myself with outsiders on why this was happening to Steve. I would constantly explain my actions, and feel like I had something to prove to everyone. If I'm honest I don't know why I'm writing this in past tense. Before leaving for the hospital I begged Steve to finally let me wash his hair, because I didn't want to deal with all the judgmental stares and comments. Of course, he was too sick to worry about his hair, and my ego needed to take a back seat. There were indeed a few comments, but mostly as I worked hard to change my perspective I was able to see that it's all me.
Truth is, much of why things happen to Steve is unknown, and much is the fact that because he has gastroparesus and doesn't get to eat real food; his body can only do so much. An Ayurvedic proverb I learned in class was "When diet is wrong, medicine is of no use. When diet is correct, medicine is of no need." While, we are so blessed with the best team to follow Steve weekly for his TPN (IV nutrition) and it saved his life, and continues to do so; it only goes so far.
So, now that we have an almost healed sore on that booty instead of a scary not healing sore; we can begin to plan our action to get that stomach accepting some nutrition. That's first, second is herbal remedies that he can tolerate also. We did start this after our last hospital visit, but we immediately stopped when the sore came because of bathroom talk. When you are fed IV food, BMs happen once every other week or so, instead of the goal of daily with food by stomach. With a sore down there, and having just overcome sepsis, Steve put up the stop sign on the stomach; for good reasons.
If you've ever wanted to know how to pray specifically for Steve or what to visualize for him, here it is. Heal sore, stomach begin to tolerate foods, stomach also to tolerate some natural remedies, and infections to clear.
I know that Steve's exhausted, he's been literally battling (people often tell me not to use that word, but that is the TRUTH) for his life this entire year. As long as he does I'm right there beside him.
Onward & upward warriors.