If you missed the first three installations – see:
So this will pretty much wrap up this sordid tale – honestly, I promise! There’s really not that much more to tell…
The last 8 weeks that I’ve been home from the hospital (can it really have been 10 weeks since surgery? wow!) have been all about trying to be a good patient. That includes:
- Resting when that’s what your body needs. Even when it seems like your body needs WAY too much of it!
- Giving your body the nutrients it needs. Even when you don’t feel hungry – sometimes it’s just what you gotta do.
- Getting up and walking. Even when the view up and down the driveway isn’t all that exciting, if you do it often enough you really *can* cover some ground!
- Trying to be brave when it’s the last thing you want to do. Even when that means the doctor is pulling out a scalpel and the syringe full of lidocaine – again!
Probably the hardest thing to handle emotionally was the fact that I couldn’t sit up for so very long. Standing or reclining or laying down were my options – with the option incision sitting up was just too painful and caused big problems.
Okay – maybe that wasn’t the hardest – feeling like this has been eternal probably is the hardest. I still feel that way – that it’s eternal. I still have an open incision that must be cleaned, packed, and bandaged daily. I honestly long for the day I can put a bra on again – with the grand canyon going on with my gut anything that rests over that top part of the incision is NOT going to happen. I tried – it was BAD. Very, very BAD. Sigh… it would be nice if the girls were at the right latitude – or some semblance thereof!
I really honestly had hoped I’d be all healed up by now and back to work. And I really thought I would be, too. A few weeks ago I started to feel better – like WAY better. I even blogged about it on my chicken blog – here. Sadly, the little naggy pain that I’d been experiencing at the top of the open incision had been escalating, and so the doctor snipped out a couple of sutures that weren’t dissolving and were poking me pretty significantly. She mentioned the knot that they were anchored to wasn’t coming out like she hoped, and if the pain hadn’t resolved by the time I saw her the next Friday (a week ago), then she’d do a little “exploratory” there in the office to go after it.
Well, as it turned out my pain hadn’t resolved, so last Friday when I went in to see the doctor she decided to do that “little exploratory.” I thought, eh, ten minutes tops, right? Nah – 40 minutes and lots of deep breathing exercises later she’d done quite a bit of digging – never finding that knot, and had also cut out a chunk at the top of the incision that had some really dense scar tissue that had been problematic. She mentioned that she’d have to take me into the OR if she were to go any further. She also mentioned a scar revision may be in my future. Ugh.
Suffice it to say that last weekend involved frequent pain medication doses, laying very still, and trying not to breathe too deeply – cause that hurt! I am happy to report, though, that by Tuesday my pain was stepping down nicely. By Thursday we were back to once daily dressing changes. And by Friday – off of the pain patch and just relying on about half a ml of morphine at bedtime for pain.
So there is some progress. It just doesn’t feel like it so much.
Can I be done with all of this now?
And don’t even get me started on the whole insurance company nightmare – I might cry.
But before I get too bummed out about stuff I do need to acknowledge that I’ve got some stuff to be very, very thankful for.
- My PTH is down to 34. THIRTY-FOUR, people! It was 189 in January! I am so loving the fact that they agreed to max out the IV calcium in my TPN while I was on it. Praise the Lord!
- My B-12 is climbing out of the pit (horrifyingly low numbers – egad!), and that helps so much with mental clarity amongst other things.
- I am able to stay up nearly all day long – almost every day. I do sometimes need to lay down and rest some – but that’s a heck of a lot better when it was polar opposite to that not so long ago!
- Eating is going better. I still find stuff that makes me feel like I’m having a heart attack (bread is evil, dense meat is wicked), and I’ve thrown up more in the last 10 weeks than I did in the 10 years prior… BUT – I’m learning. And I’m trying to be wise with calories and nutritional needs.
And – I have been reminded – one more time – as if I didn’t know it before – that I have THE most amazing husband on the planet. How many men do you know that will lovingly, tenderly, carefully do wound care – big, ugly, gooey, yucky wound care – for weeks and weeks on end? Or that will praise you for the teensy little things you get done – when you feel like you ought to have gotten SO MUCH more done? Or that gives you permission to whine? I gotta tell you – my husband is so amazing. I get choked up when I think about how blessed I am to be his wife – and the recipient of his tender care.
So – that’s pretty much the long and short of it.
I’ll continue to update as I continue to figure out this whole new gut configuration. I’ll try not to whine too much about the loss of my pylorus – you know us DS’ers – we’re so in love with our pylorus! (To quote a surgeon who said that with no small amount of disgust!) I’ll admit it – I was – and I’ll miss it, likely for the rest of my days. And I’ll report as the healing continues, and hopefully one day soon I’ll be able to say my incision is closed up and I’m able to function as a normal member of society again. (Not a bra-less floozie! LOL!)
Thanks for being there, pals. You bless me!