Tuesday, December 5, 2017

"Every breath you take is a miracle!"


"How's your breathing these days?" It may seem strange, but this is a pretty typical catching-up question between my friend Anna and I when we hang out... just two little asthmatic chicks looking out for each other. When she asked me last week, I kind of frowned and had to think about it for a minute, trying to recall the last time I woke up congested and rattling, the last asthma attack, or the last major aspiration I've had during a meal. 

But it's been a while. 

In fact, digging through my purse the other day, I found my ProAir inhaler and realized I haven't used it in over a month... a month! For the past couple years, I've gotten used to needing a couple puffs at least once a week. The weather here has been nuts lately, too - dramatic warm/cold/dry/damp conditions that usually aggravate my lungs all the more. So this season of good health can't just be a fluke, can it? 

For the past few days, I've found myself escaping the hectic buzz around me by just taking a slow and deep breath in, and enjoying the clarity, silence, and even strength of it... and then letting it all exhale, just to let another full dose of oxygen fill me again. It sounds crazy, I know, but I think my lungs are actually getting stronger. I think Spinraza is helping to rebuild my respiratory/pulmonary functions - a part of my system that has caused the greatest concern and fear in my life over the past 25 years. 

About 20 months ago, Kevan introduced me to a new song by Switchfoot called "Live It Well." The opening lines are incredibly relevant and powerful, especially to kids like Kevan and I: 

"Take the burden from my arms, 
Take the anchors off my lungs, 
Take me broken and make me one, 
Take the silence and make it a song..." 

We know what those burdens, that brokenness feels like, beyond the metaphorical... that invisible weight of gravity that holds down our arms, and the anchors that press on our lungs. Those lyrics became a deep and resilient prayer in my heart. Before a treatment called Spinraza was announced, a seed of hope grew in me... that somehow the Lord would lift these burdens so we could breathe deep and free, so we could move without restraint. And I think he is answering that prayer. 

"Life is short, I want to live it well,
One life, one story to tell
Life is short, I want to live it well,
And You're the One I'm livin' for
Awaken, O my soul, 
Every breath that you take is a miracle..." 

Thursday, October 26, 2017

Two things tires and Connies shouldn't do

...swell and leak. 

Unfortunately, most of my energy this week has been spent doing these two things. My new surgical incision started seeping at varying intervals and in varying quantities, and my back got pretty swollen and sore, too. I went through quite a bit of sterile gauze, paper tape, Tylenol, and ice packs. When I was up, I wore a back brace like a corset, and when I didn't have to be up, I was laying flat on my bed. When I was at my best, I was praying and singing praise songs, and when I wasn't, I was racking my brain for what else I could do to make the healing process more successful. It was difficult. 

My one-week check-up last Thursday was quite a long, confusing, and exhausting mixed bag, but the best thing that came out of that time was that I was able to get my last loading dose (#4) of Spinraza! So I don't need another one for four more months - that's February, people. Praying that we'll get to see some good progress in the meantime. If I do, I'll be sure to report it right here, so stay tuned!

My two-week check-up today was much shorter and sweeter. I got my stitches out, and miraculously (seriously, it's a miracle) my back has stopped swelling and leaking, and is looking much more normal... well, whatever my "normal" means. So I got the A-OK from the nurse - no more gauze, no more corsets, no more bed rest. To me, this was great news... it means maybe, just maybe I can get back to really living my life. 

Which is a good thing, because tires and Connies are meant to move... there are so many places to go, people to see, and things to do! Look out world, here I come (again)!

Saturday, October 14, 2017

Praying doctors


As usual, things were more complicated than expected with the surgery on Wednesday. The first big issue was getting an IV in me in pre-op. Historically, my little, unstable veins do cause problems with this, but very kind and skilled medical professionals with very high-tech equipment shouldn't be dealing with six failed attempts... and yet they did. I could almost swear my veins saw the needle coming and fled for shelter. 

So after all that, they decided to take me on back to the OR and give me some "laughing gas" - which at this point did not  make me laugh - and try again. As I faded in and out of semi-consciousness, I could tell they were still having trouble and I began to wonder what they would do if they couldn't get a vein. Then I heard the guy who was holding the mask on my face say, "Dear God, please let this work." And then another relieved voice said, "We got it! Guys, we're in!" That is the last thing I remember, and the last thought I had as I fell asleep was, I am so thankful for praying doctors. And I've been incredibly blessed to have quite a few of them this year. 

Apparently the tube had come completely out of the hole in my vertebrae, so I'm glad my neurologist had the good sense two weeks ago to not give me my next Spinraza dose. The surgeon did all he could think of to secure everything so we don't have to do this again - some sort of sealant, extra living tissue, and "tacked" the port in two places (whatever that means). The problem, it seems, is my muscles - they just aren't big enough and strong enough to create stability and provide support for this sort of thing. Ironic, since the point of all this is to be able to get a medicine that could change all that. 

I didn't have to spend the night at the hospital (yay!). I was there 12 hours, and after a cup of pudding and the doctor's approval, I got to come home and sleep in my own bed that night. So, I've been in bed most of the past three days, and plan to continue this until Monday. Praying for everything to heal as it should, and everything to stay in place!