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.

Sunday, September 17, 2017

The hemming in

My third dose was on Friday, September 1, and it was fine, just not very blog-worthy. Because my back was still quite swollen from the surgery, my doctor used an ultrasound machine to find the reservoir and be precise with the injection. At this point, I have noticed some increased strength and flexibility in my fingers and thumbs... which is definitely encouraging! I'm hoping to continue to see progress there, and maybe attempt some of my old handicraft hobbies again this winter, like crochet and cross-stitch. I found out that my neurologist likes to cross-stitch pictures of the brain... maybe I'll try that, in honor of her support?

The following Tuesday, I had my one-month check-up with the neurosurgeon. I almost didn't go, as I felt like I'd spent enough time at the hospital for one summer. But I do like my neurosurgeon, and thought it would be nice to have him see how well I'm doing... except for that annoying swelling that just won't go down, and those nagging pressure headaches when I lay down. I suppose it's a good thing that I went to the appointment, because when I told him about my two little inconveniences, he took a look at my back and declared (with some displeasure) that I still had a CSF leak from the area where he had placed the tube in my vertebrae. Apparently, I am more active than he anticipated, and didn't lay still long enough for it to fully heal. He explained that he had put some extra muscle tissue around the tube, but that it needed time to heal and seal up the gap where the fluid leaked out.

He gave me immediate orders to take a week off work and lay flat on my bed. I nearly cried, and told him I really couldn't take that much time off - I had too much to do! So he said, "Two days, then. We'll see how you are after two days. I want to see you here again a week from today." So I took my two days off and did what he said. On Thursday afternoon, I called to give an update. Better, but still swollen, still getting headaches. He told me to stay in bed until my appointment on Tuesday - sneaky little bugger, ended up making me stay in bed a week anyway! Then the ominous news: "If I'm not pleased with the progress by then, we may have to do another surgery."

Oh God, please not that. 

There was a shift in my spirit. I could feel fear and frustration and anxiety and despair begin to creep in. Stillness and silence can be a breeding ground for all sorts of psychological and spiritual battles. I had this surgery - I was getting these treatments - in hopes of being stronger and more active, and here I was, able to do nothing at all but lay down and wait. I needed to proactively fight the brooding darkness... so I prayed for help and grace and courage.

And then I sang. I mean, a lot. And loud. For...hours. I sang praise songs, songs of hope and truth. And I felt my spirit lift and embrace joy. During this time, God brought to my mind this verse:

And it comforted me. I thought of Jesus using his personal sewing kit and stitching up all the gaps in my back where spinal fluid was leaking out, and then stitching up all the gaps in my spirit where trust and hope was leaking out. I claimed this verse in the most literal way I could, trusting that he has and he will hem me in. It was the sweetest and most intimate time I've spent with my Savior in a while. As difficult as it is for me to be still, that's exactly what I needed, to remember that it is God who heals, who redeems, and who makes all things beautiful in his time.

The week finally ended, and my second appointment was much better. The swelling has gone down quite a bit and my headaches are gone. The surgeon was pleased, and said I could return to work, as long as I tried to rest and lay down as often as possible. I am trying my best! The next injection is September 29, and the surgeon has requested to be present for that to check my progress. Please pray for continued healing in the meantime!