Ten Terrible, Horrible, No Good, Very Bad Days

Friday, May 24 began, for the most part, as it was supposed to, and by that I mean was unfolding according to the manageable, preconceived series of events I had mentally mapped out for myself.

My surgeon met with me early in the AM, informing me that Thursday’s tests had gone quite well and that my adrenal function was entirely normal, thus ruling it out as a culprit in the unexplained blood pressure drops. There were some lingering questions on the endocrinological front, but those are long-term management issues, a few of which I have been undergoing treatment for, for some time now (extremely low thyroid function, for example.)

So, with the blood pressure relatively stable – if still on the lower end of the scale – my medical team thought I’d be OK to kick off the weekend at home. After 11 days in hospital, I was given the OK to start the next phase of recovery at home. I was a little hesitant, however. Yes, I was feeling pretty darn good and yes, everything was going better than could be expected, but it’s all about the comfort factor, and what seems like a minor incident in-hospital can fast-become a crisis at home, simply because of the lack of resources. But I trust the judgement of my medical team and my surgeon, so I eagerly signed the discharge form.

I had a nice little send-off, too, from a good friend, as Canada’s favourite dragon/serial philanthropist W. Brett Wilson happened to be my floor-mate for a few days, having been admitted on the adjacent ward for an (obviously) unrelated matter. We had a nice little chat – him looking marvellous as always, even when the only accessories are a hospital gown and IV tubing, me looking quite literally like I’d spent the past 11 days in bed – and it was a much needed hug and familiar face that reminded me just why I was ready to go home: I have such an incredible support system – family, friends, medical – that if anything were to go wrong, they’d always be right there to see me through.

You can probably guess what’s coming.

I was discharged at noon and, though not feeling completely confident in that decision, had everything necessary to make the transition to the home-care phase of my recovery a success. I arrived home to an incredibly emotional (for me, a sobbing mess; exciting for her, as she couldn’t quite wag her body hard enough to convey her happiness) reunion with Brio, and a house entirely re-arranged to make every movement just a bit less strenuous as my body continued to heal.
(Because my mom is fantastic like that.)

I made myself some plain tuna mixed with sugar-free, fat-free lemon parfait yogurt, freshly diced avocado and tomato, a twist of lemon and a pinch of salt.

Nothing rich, nothing heavy. Just much-needed protein, fats and a few carbs. The gut was still unable to tolerate much, but as the swelling lessens and motility is restored, so too will a normalized intake.

Shortly after eating, however, I knew something was wrong. My abdomen became distended and firm to the touch, and I was incredibly nauseous. You’e just tired, I thought. The trip home was more taxing than expected, so your guts just need some extra time to relax, settle in. Take a nap and you’ll feel better.

But I didn’t feel better. In fact, I felt a hell of a lot worse. Intense waves of nausea swept over me, alternating with rolling intestinal spasms.

I need to go back.

I stumbled into the Rockeyview ER somewhere around 6:00 Friday night and was promptly triaged, X-rayed, intubated, and admitted. Because my surgeon was not on that weekend, I was put under the care of a general emerge surgical team who quickly established that I had developed an obstruction high-up in the small intestine. They weren’t sure, however, whether this was the primary cause of the total intestinal shutdown I was experiencing, or whether I’d developed an ileus — a common post-GI-surgical complication where the intestine essentially ‘goes to sleep’, or as my surgeon puts it: “the guts don’t like to be handled. It’s common at any point after GI surgery for the intestine to just take its ball and go home for a while, and there’s nothing you can do. You just have to wait it out. It can take hours, or days, or weeks. But the only solution is to wait it out.”

Though having my stomach pumped through an NG-tube — a long, finger-like flexible (HA) tube that’s threaded up your nose and down into the stomach to ensure there is nothing – not even gastric juices – entering the intestine, allowing for a full bowel ‘rest’ and (it’s hoped) speedier end to the ileus, my ‘ileus’ was not behaving in a typical manner. For example, there were plenty of bowel sounds and deep intestinal rumblings, which is something that doesn’t happen during a true ileus. What’s more, after the initial contents of the stomach were completely pumped out, there wasn’t any lingering nausea, only pain.

So. Much. Pain.

The best way to describe it is as follows: Imagine a multi-pronged harpoon, one you’d see in a horror flick – serrated blades, plenty of moving parts – designed to inflict maximum damage. And now imagine that harpoon methodically working its way across your abdomen, left to right, thrashing its way through the tissue, shredding everything in its path, until all that remains is an intestinal pulp.

No moment of reprieve, no period between attacks to gather myself; As soon as one wave ends, the next begins.

By the time my surgeon arrived on Monday he had determined that this wasn’t an ileus, but an obstruction, likely due to the amount of swelling still present in the smal intestine. Not keen on going back in so soon after a major surgery, he suggested we wait this one out too, as post-op obstructions almost always work themselves out without further surgical intervention. He ordered the NG-tube be removed as it wasn’t draining anything substantive, and ordered the PCA pump (morphine every 6 minutes) be re-established.

I also had a PICC line (long IV, inserted above the bend in the arm and threaded up the arm, across the collar bone and down into the superior vena cava/heart) started on Thursday (May 30), allowing for TPN – nourishment through intravenous – to commence.

Though nutritionally stable with the TPN, my blood pressure is once again dipping due to the high doses of morphine required to control the pain — and by ‘control’ I mean make it tolerable enough that I’m not constantly screaming/sobbing.

I honestly do not believe this is an obstruction that will work itself out; In fact, I’m at the point where I’m ready for another surgery ASAP to permanently fix this — I cannot wait it out. I’ve reached my limit: I’ve now been in-hospital as long for this post-op obstruction as for the major surgery itself.

And that’s not OK. And tonight, for the first time, I’m not OK

Here’s hoping Monday brings with it a fresh approach to tackling this setback, so I can finally resume with the planned recovery process.

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Many thanks to Jen Gerson and Alex Muir for the sunflower, balloon, and rousing game of Settlers of Catan.

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One thought on “Ten Terrible, Horrible, No Good, Very Bad Days

  1. Doug De La Matter says:

    My dear friend, how do I tell you what your news feels like? I’m relieved to see that you are well enough to write, but devastated by what you are going through. There is an old saying “shared pleasure is doubled, shared pain is halved “. I hope sharing your struggles with us all allows us to do our part and make your journey a little easier. You are amazing. You are courageous beyond belief. You WILL get through this. Alheli, if each of us could take your place for just one day, we would be scared silly to do so, but there would be a lineup of volunteers outside your door. You were one of the most impressive people before this started. The mental strength you have developed in this torture chamber will make you scary-impressive when it is all over. Meanwhile, never forget that there are so many people in your corner, we’re stepping on each others toes. And if you ever doubt our connection to you, just ask “why did Doug wake up at 1:00AM with the need to check Twitter, just after you posted your latest news? “. Sleep if you can, knowing that we are all doing our best to help pull you along the road to recovery. Courage, ma brav. We shall have our victory party and what a party it will be!!

    Like

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