When the drugs don’t work

“But I’m the patient!” The words roll of his tongue, and we can hardly argue with him. Not after everything that happened after the surgery.

This is the last medical post, I promise, but I’m writing it because it might help other parents in similar circumstances. And because, I guess, I’m still processing it all myself, and filing the memories in a safe place in my heart.

Everyone told us he’d bounce back from surgery fast. “He’ll be on his feet in no time,” people said. “Kids are so resilient.” I believed them because I wanted it to be true; I’d nod, agree and remind myself what the doctors had said about doing this surgery (on his bladder) while he’s still young.

I imagined him eating jelly in bed, and being discharged a few days later.

The first hint that these things don’t always go to plan was when the surgery to remove a diverticulum took longer than expected. At the allotted time, DH and I nervously positioned ourselves outside the OR, where we’d been told to wait. I anxiously peered through the oblong window, willing the surgeons to appear.

They didn’t.

We went back to the room to wait, for another hour – until finally, the tension was over. Five hours after Son1 was wheeled away, we got him back, half asleep and wired up to medical equipment.

After becoming a pro at calling the nurse, Son1 now wishes he had a call button on his bed at home

After becoming a pro at calling the nurse, Son1 now wishes he had a call button on his bed at home

When the surgeon told us all had gone well, I could have hugged him. He then went on to explain that it had been more technically complex than anticipated; he used words like ‘stent’ and ‘reattaching a ureter’, and, again, I nodded, in full faith that they knew what they were doing.

Which they did. Our doctor is great (he’s promised to take Son1 out for a burger), but what they didn’t know was that Son1 would suffer from the most excruciating bladder spasms – a distressing side effect of catheter useage that can cause severe cramping.

I can only compare these spasms to labour pain. They’d come on suddenly (3 or 4 times a day), and Son1 would scream for an hour or more in absolute agony as his bladder involuntarily contracted. He’d sweat profusely, his hair matting to his head, and at one point – after becoming horribly sensitised to any kind of pain – I was terrified he was going to black out.

The painkillers they administered didn’t touch the pain. Morphine would eventually send him into a drowsy stupor, but the other medicines did little to relieve the spasms. The only thing that worked was flushing the catheter, a procedure only the doctor could do at first. And, believe me, I fought tooth and nail to get the doctor into the room. (I quickly figured out that with all the nurse shift changes, we knew more than they did about how to manage the pain.)

But the truth is, we weren’t able to manage his severe spasms. While he did have long periods of being perfectly fine, when the spasms hit, he was demented with pain, and after seven rough nights, during which DH and I took turns to attempt to sleep on a narrow sofa in the hospital room, we were going out of our minds too.

To cut a long story short, the catheter was removed a little earlier than it should have been, and once we’d got over the hurdle of retraining his bladder to pee (major potty training flashbacks for me), and teaching him that peeing would hurt for a while, the spasms stopped, and he hasn’t had one since. Thank.God.

The thing I want to remember, however, is how brave Son1 was. Yes, he screamed the hospital down (I saw a lady with another child deliberately avoiding walking past the door), and was frequently inconsolable. I’d stroke his hair, wishing I could take the pain away, and cried myself several times as my heart broke in two. But I saw a strength in him that took my breath away.

He walked on day 1; accepted and understood what was going on without question; and really tried to follow the nurses’ instruction to breathe through the pain, until it became overwhelming. I was so proud of him, and for many of those endless hours spent sitting with him, we enjoyed a closeness borne out of his new-found maturity (as well as lots of jelly).

On day 8, they let us go home. I can’t tell you how good that felt, and now he’s bouncing back, like everyone said he would, and I’m beginning to breathe easy that the ordeal is over.

EDITED TO ADD: Six weeks post-op, and it’s like it never happened! As soon as we got home, he recovered fast. It’s amazing how kids bounce back, and move on. As for us parents, it takes us a little longer!


About Circles in the Sand

Sun worshiper, journalist, mother, pilot's wife and distracted housewife living in the land of glitz and sand
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10 Responses to When the drugs don’t work

  1. Molly Gryskiewicz says:

    Marianne I am so happy that it’s all over…I can only imagine the pain he felt, along with the pain in your heart! Hugs 🙂 take care of each other!

  2. I’m so sorry that he had to go through it.. I can only imagine how hard it must be for you to see him in such pain. I’m glad he’s ok now.

  3. I’m so sorry you had to go through all that M – how awful to see him in so much pain. I’m so glad he’s feeling better.

  4. M says:

    *hugs* I am so glad that this is over for you.

  5. MsCaroline says:

    Oh, this just took my breath away – hurting for him, and so much for you. Glad this is over, but I can’t think of anything more painful for a mother than watching her child suffer. I had an ‘out of control pain experience’ with MrL after emergency surgery for an uncontrollable infection in his leg, and it left me absolutely shattered. Can’t even imagine it with one of the boys. Many hugs coming your way and so thankful for all of you that it’s over. xx

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