Recovering from stoma surgery & investigating a blood infection

It’s been a tough week. I’m exhausted. It’s hard to describe the feeling, it’s simply mentally draining at the moment.

I spend all my time worrying about Clara that I have to remind myself to enjoy the moment. I’m sure every parent feels this, in fact I’m sure the worry never leaves: from the first day at nursery, to the day she gets married, and beyond. For me though, the worries have built up as a result of this ongoing medical saga. So I pull Clara to me tighter, cuddle that bit longer, and whisper “I Love You” those extra few times in her ear once I’ve put her down.

Post operation, Clara was weaned off her morphine and she coped wonderfully as usual. Her catheter came out, and even her cannula gave up and was removed. Clara sure knows how to normalise herself post-Op at a good pace now.

A lot of this is down to the exceptional nursing care we receive on the ward – they help Clara to help herself at her own pace. They also help me, they remind me to treat Clara as normal, they remind me that cuddles with Mum are equally important to the healing process for Clara and I shouldn’t be afraid.

I was shown how to empty Clara’s colostomy bag and I’ve been able to do it myself ever since, every time I do a nappy change or before I pick her up if she’ll be putting pressure on her front. (I’d like to minimise the risk of any stoma poonami’s please.)

I’ve not yet tried to replace her colostomy bag. It still frightens me that I won’t place it in exactly the right place (she’s a wriggler and hates being naked – angry pooing is an actual thing if you didn’t know and not something I can manage singlehandedly from an uncovered stoma yet!). I really don’t want to be responsible for damaging her skin because the acid content had leaked. That scares me.

Despite these new cares to learn, it should have felt like we were close to getting back to ‘normal’. Back to milk feeds, tpn breaks, and walking around the ward with my baby in my right arm and her pump stand in my left. Perhaps looking ahead to what comes next.

But for some reason all of that still feels a very very long way away.

Clara’s not even back on TPN post op yet. We can’t risk encouraging bacteria growth in her hickman line. (It would love the warm, moist, sugary environment). She’s got sugary salty waters going through to keep her levels up, but no nutrition.

We rushed Clara with 2ml of milk and omeprazol. It was too much too soon and within half an hour she had two green vomits. She’s since been able to tolerate 2ml of milk three hourly but at that time I panicked, wondering if she’d be able to ever get up to proper oral feeds.

A horrible blood infection was identified in Clara earlier this week which was immediately treated with antibiotics. A further test came back negative, but a final check came back positive. Two further blood samples have been taken since so we are nervously awaiting the results. A positive result, for such a terrible infection, would be another horrendous backwards step. It would mean another trip to theatre, this time to remove Clara’s hickman line and try to get place another. However there’s only a certain amount of chances you get to do this so every line change is a last resort. In this case, however, it would be crucial as keeping the line with such a nasty infection living inside it would be catastrophic for Clara.

Whilst we wait for the results, a lumbar puncture was arranged today. This involves curling Clara up into the fetal position, and using a needle to extract spinal fluid. This will then be tested for the same bacteria – ultimately, if positive, this would mean her brain is at risk of the nasty infectious bug. We need to wait until Monday for the results. I won’t rest easily until they’re back.

The one thing keeping me sane is Clara gives no indication of being unwell. No temperature, not extra sleepy, not sensitive to touch, not vomiting. But then Clara never has followed the rule book.

Then there’s still the worries about her hearing. Assuming it is profound hearing loss, or even partial hearing loss, what does that mean for her speech? Her other cognitive development?

We have another MRI next week to try and identify white matter on her brain. What’s the meaning and impact of that? Right now we don’t know any of those answers.

I know now it’s the fear of not knowing that scares me the most. I’ll be the first to admit I’m a control freak. I’d plan EVERYTHING. Colour coded spreadsheets and corresponding lists are my thing. My comfort zone. And right now I’m so out of that.

I want to fast forward six weeks, six months, six years, and reassure myself that everything is going to be okay. Because sometimes I know that it will be, but a lot of this last week has been spent worrying that it won’t be. The worst case scenario in every situation seems to be the only thing my mind can register. It’s so unlike me, it’s discomforting.

I hope we’ll look back and smile, wondering why we wished the time away.