Operation #5 Fixing a problem and getting a stoma

If you read the blog post before this, you’ll know I knew something was up. Mother’s intuition again came up trumps. Wondering what mother’s intuition really is? It’s just gut feeling mixed with being the one who sees your child the most.

I knew she was out of character. I knew her tummy was distended. (In fact I flagged both issues on the Sunday, insisting a doctor assessed her).

By Tuesday, Clara was unwell for all to see. Her temperature had spiked to 38, indicating a fever, and she’d passed no sign of a stool in days. Her tummy was tender and swollen, she’d scream if you picked her up.

Luckily, her surgical consultant, Mr Lee, noticed when he reviewed her that morning. Clara troubled Mr Lee – something was wrong. He decided to operate.

I was partly in shock, but also partly scared at the realisation that I’d thought/knew this would happen. I’d woken up Tuesday morning so unprepared to face the world. I just knew a bad day was ahead for both Clara and I.

Clara spent time that morning curled up on the lap of Laura, a particularly wonderful nurse, who I’m sure looks after me as much as she looks after Clara! Clara clearly felt comfortable with her but there was no disguising the pain.

We didn’t know when Clara would go down for theatre as there was no clear slot for her. Plans had to be cancelled, both ours and theirs, to make it happen.

At 4pm we got the call. I walked the ever familiar corridor to the anesthetic room, where I knew I’d lay Clara down on the bed in the middle of the room, confirm her details and that I understood the procedure, and give her a kiss once the anesthetic had knocked her to sleep.

For the first time, I didn’t cry leaving the anesthetic room. I knew how much pain Clara was in and how out of sorts she was. Weirdly, I’d been counting down to theatre all day, knowing that was what she needed to make her better. It felt like it couldn’t come soon enough. So leaving the anesthetic room was tough, purely because leaving your naked little baby unconscious on a bed with five medical professionals in blue scrubs and masks is intimidating and scary. But she was in exactly the right place.

I’m used to the waiting during operations now. Nothing will be worse than the ‘will she/won’t she survive’ operation early January, operation #2. This time, I wasn’t counting the hours – I was just waiting to hear what the outcome would be. Just how bad was it. Just how lucky had we been, again.

This time, I decided to keep myself busy. Dean had to go back to work for a few hours to ensure life in the real world continued for his business this week. I visited Ali in NICU to update her on what was going on – it’s truly wonderful how Clara has touched so many hearts on her journey already. I went home to take back washing and pick up more clean clothing for the weeks ahead.

By the time I left the hospital it was 5pm – rush hour. I gazed at people next to me, similarly staring out of their windows contemplating their day, or rummaging around in their belongings waiting for the traffic to start moving again. It took me 45 minutes to get home in the traffic, but I didn’t mind. I wasn’t in a hurry, I knew now how long these things take.

I was at home for 15 minutes before I knew I had to leave. I’d gathered everything I needed, I couldn’t wait there any longer. It’s been a long time since I was living at home, 12 weeks to be precise. Despite the recently renovated kitchen and dining room, the pretty living room with all of the pink ‘New baby’ cards above the fireplace, it didn’t feel very homely. It was quiet, and empty.

I drove to Sainsburys. The perfect place to kill time and stay busy, surrounded by strangers in a bright and loud environment. The complete opposite of home. I rang Dean on the way, letting him know I wasn’t staying at home and spontaneously we both said “Meet you there?”

And it’s a good thing we did. I drove into Sainsburys car park to park in my usual space, and there was Dean. As I pushed the button to turn the engine off, my Bluetooth kicked in and the phone rang. Private number. The hospital.

I answered, simultaneously beckoning to Dean to get out of his car and jump into my passenger seat. It was Clara’s surgeon on the phone.

Mr Lee said he’d found the problem. The 1.5cm of bowel that had been saved and reused was the problem. The lining had collapsed and stuck together, effectively forming a blockage. Pressure had been building and as a result a stitch had burst. It had begun to leak.

We are very lucky that Mr Lee made the decision to go in that day to see what was wrong. He predicts it was only leaking for 8-12 hours. Any longer and the effects of such toxic waste loose in the body could be devastating.

We headed straight up to the hospital to see Clara. She was back on the ward, hooked up to morphine, and sleeping peacefully. Her body was red (part blood transfusion, part anaesthetists handling her), and her face was swollen (from fluids). All we could do is let her know we were nearby as she slept and recovered.

We’ve since also found out Clara’s blood has an infection, most likely a result of the intestinal leak. She’s on antibiotics to hopefully overcome this.

Clara is now left with a stoma, and she’ll have it for some months. Rather than reconnect angry bowel (the inflamed upper part of her bowel) to healthy happy bowel (the colon), the decision was made to bring her small intestine, at the point where the 1.5cm of bowel had been removed, to the surface of the skin. A colostomy bag covers the stoma and will collect the output. This will give her bowel a chance to calm down and recover fully, before she’s reconnected again later this year.

It’s one more thing for us to learn to care for, but that’s no bad thing. If there’s one thing we can take out of this experience, it’s a whole load of new knowledge.

You never know, I might be the first Social Media Strategist by day, paediatric nurse by night!

Possibly my new favourite photo of Clara, despite the NG tube taped to her nose. Those eyes! (This photo was taken after her reconnection surgery but before she fell ill).

3 thoughts on “Operation #5 Fixing a problem and getting a stoma”

  1. Poor little mite ! How on earth are you and Dean coping with all this ? And what an amazing girl you have there. With much love to you all Multi and Papa
    Sent from my iPad
    >

    Like

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