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!

Thursday, October 5, 2017

There's good news, and there's bad news...

The past week has felt like an internal tug-of-was between Tigger and Eeyore:

Image result for eeyore and tigger

I went to the neuro clinic last Friday to get my fourth dose - the final dose of my two-month loading period. The neurosurgeon came in to check on me, too, and he and my neurologist agreed that, while my back was looking much better, it would be a good idea to draw the rest of the fluid out before doing the treatment. They got 70 cc's of fluid off! (That's 12 teaspoons, or 2 fluid ounces, or a standard shot glass, in case you were wondering.) My back felt and looked SO much better, once my camel-hump was gone.

That was the good news.

After that was done, my doctors found that the port/reservoir (the one that was installed, for injecting the medicine) had significantly moved to a different position in my back - placed originally to the left of my spine, it was now on the right side, and was floating further and further east. They became concerned that the tube in my spinal chord had come loose. They had difficulty drawing CSF out. They did not do the injection. They sent me for an X-ray. Over the weekend, I learned that the tubing has coiled up in my lower back, and had pulled further out away from its original location.

That was the bad news.

This must be repaired, if I want to continue the treatments, and that means... another surgery. It's scheduled for next Wednesday. The good news is, my fall break from work is next Wednesday through Friday, so I don't have to miss any days of work for the procedure or healing time; the bad news is, I will be spending my fall break in a hospital and laying flat in the bed for several days, instead of... doing anything else.

A friend asked me the other night if I regret my decision to go through all of this. While I am frustrated and a bit weary, I wouldn't call it regret. If I had known beforehand all of these complications would happen, I probably wouldn't have done it, because I'm not as strong and brave as I'd like to think. But I think that's pretty classic of a lot of things in my life... with so many of my experiences, if God had told or shown me how difficult and painful they would be, I would have refused to be obedient and would have chosen to stay as safe and comfortable as possible. That's why I'm glad he didn't. Those same difficult and painful journeys have become some of the most powerful and beautiful experiences of all. They have led me to meet some remarkable people, learn incredible truths, and see and do things far beyond my craziest plans. God doesn't waste a single ounce - or teaspoon, or cc - of the moments that make up my days. He is able to use and redeem even the scariest, most complicated, most exhausting and hard things, for my benefit and his glory.

And that's the good news.