It feels fitting to find my way back to blogging when we are on a good streak. It was a year ago earlier this month that Steve was told this lung infection (ESBL ecoli) was not going to get any better. We took the news hard because we had seen how resistant to antibiotics Steve was and just how sick this infection was making him.
The past year started with a dark cloud. We were sad, and really Steve was trying to prepare me for him dying. He felt the infection in his lung and he was terrified of what it could do. Steve required antibiotics every 3 weeks on average this past year. Where we were grateful the antibiotics would provide some relief from his symptoms, we also were aware that this kind of antibiotic use, when Steve’s already reached antibiotic resistance, had only one outcome.
This has weighed on us, and it’s been reminded to us upon every single hospital visit. The concerned discussions of what bugs and sensitivities are growing in cultures. The comments about us, “Being back so soon.” It has been hard to dig our way out of the fear pit that was sucking us in.
Which is why our good streak means so much. Because it means so much I waited to talk about it. I’ve had this thing where talking about things on the internet sometimes comes back to bite me, and it feels like a jinx. If you haven’t figured it out I am off the charts in superstition.
However, we reached a very big goal, while also being realistic that we could end up in the hospital any day; that is our reality. We wanted to feel the celebration and let go some of the seriousness and fear. I wanted to share some of the things we are doing different in hopes that maybe it can help anyone in this position.
To begin with Steve is turning more frequently. While turned I have been cupping his back and his lungs will dump sputum and clear. This helps get stuff that is out of reach from the suction catheters, and that he can’t cough up. It’s the most effective lung thing we have tried (front lung cupping and lung massage being two others we tried) Turning also is helping his butt (mostly) heal which is one less source of infection.
Being used to turning so many days has helped remove some of the drama around moving his bowels, so he hasn’t refused any teas since being home in June. Fueled by his teetering hemoglobin numbers and his desire to see how long he could go without antibiotics. The herbs we give him are Nettles and Chickweed to help him build hemoglobin, Marshmallow to help with his constant UTI’s, Mullien as a lung tonic, and one of our favorite adaptogens around Tulsi. Please note if you do try to take any herbs I ever share, please do your research. These are obviously gentle but I remember using turmeric on Steve, because everyone throws it’s safeness around and his hemoglobin dropping significantly because of it. We have to do our own research, and use our own judgement instead of accepting all that is handed to us.
I also think Steve seeing that he doesn’t have to be on antibiotics every three weeks has helped boost his self esteem. One month and two weeks may not seem like a lot to those who don’t have chronic super bugs, but for Steve it’s the longest he’s gone in a year. He needed to be reminded of his bodies ability to heal.
We did have one close call episode that wasn’t fever related. I’ve been tracking his daily fevers and thankfully they have been his low grade ones that are not reason for alarm. Just as a side note, we have a set fever that we take Steve in for, and thankfully our infectious disease doctor removed the guessing in this process.
So our scary day. We turned Steve, like we would any other day, and as I was cleaning him and doing wound care I asked to massage his lungs with this lung oil I make him. We’ve used it 100 times before, without it working THIS well. So after being turned, he had dumped some sputum in his tubing, and I wanted to get clean tubing on him.
It was a perfect storm. The oil broke up lots of junk wanting to come out, and just as I changed the tubing Steve felt a plug, began to panic, and as he was trying to breath, he was missing the vents breaths. With beeping machines and looking into that face I’ve seen too many times, I realized he was not okay and if you want technical terms he was coding. I grabbed the pulse ox to see what his O2 was reading. When I saw 80, I grabbed an oxygen tank and gave him 8 liters and grabbed the ambu bag. I immediately started bagging him. I didn’t realize the plug was there at this time, I was just thinking the tubing was bad and I planned to bag him until I got his numbers up and then change the tubing.
It wasn’t until the 4th pump of the bag that I felt the plug break loose and his numbers started to go up. I continued to use the bag until he was at a number we felt comfortable with (95) and then switched back to the vent to do a TON of productive suctioning. The whole experience lasted maybe 10 minutes but it felt like it had been hours. Obviously traumatized but also very grateful, because it could have gone very wrong. I almost called 911, but really felt I didn’t have the time, and that I needed to act. Plus my phone was in the other room (rookie mistake). Also note I was doing this one alone.
Even though the event was terrifying after Steve was stable, although he was anxious and I was shaken, we both felt a bit empowered. It had been some times since I felt like I could really help Steve with where we are, and between this length of time off antibiotics and my quick response to this event I felt like I really do have this.
His lungs have lots of stuff in them, and his urine isn’t 100%; we know this. However, when you’re in this situation you have to celebrate good even with the bad existing. I do feel like a lot in life is this way. We cannot forget to celebrate when life gives you gifts.
There’s so much talk about good and bad not actually existing, or, what is good or bad? While, I do see there lies some truth in there, I experience the truths of duality every single day. We know Steve’s not 100% clear of these infections but we also know right now they aren’t causing us trouble.
Thankfully although we are aware of the possibilities of a flare up we can appreciate this little streak we are having. We also know what we are doing is working, and plan to keep doing it! :)
Will we be upset if a hospital visit comes? Yes. Only because we ALWAYS are. However, will we have the perspective that we could make it even longer next time? Yes and that is gold. Life has reminded us that Steve can heal, and I can help him, and I can be what he needs.
I try to be so perfect and get really upset when I’m mean. I try to talk about my meanness not in a shaming way, but in one where I admit I’m addicted to my meanness. My anger became what fueled my sleepless, anxious, over stressed body. When I have a moment where I loose my cool, I immediately feel like I can’t be what Steve needs. However, life reminded me, I can. This eclipse and retrograde month may have been intense, but sometimes the most profound understanding comes from such heightened times.
Knowing I can do what needs done, alleviates the constant worry in the back of my mind. With less worry comes less reacting. I’m grateful that Steve is willing to continue to put the work it takes to battle these complications. I find it awe inspiring the things he goes through to choose life. I’m thankful he’s understanding of my momentary meltdowns; and just as he’s never given up on life, he’s never given up on me.
To all my caregivers out there, remember you are doing amazing. You are showing up even when life is really hard. If life hasn’t given you a reminder in a while of how capable you are, then let me remind you. You’re a gift to this world, and you can do hard things.