The hardest thing

Operating Room

Although I think most people who know me would describe me as a bit of a drama queen, I’ve managed to keep a pretty tight rein on my emotions during our numerous trips to the hospital. It’s not that things don’t make me sad, it’s just

In fact, I can only think of two times I’ve actually broken down and cried. One was when Lil Z had a seizure in hospital and afterward she cried for FIVE hours. It was evening (so I had the guilt of keeping all the other kids on the ward awake), I was on my own (QB was at home with Vegemite) and although she was obviously distressed, there was absolutely nothing anyone could do for her.

The other was the first time Rett Syndrome was mentioned to us. I had no idea what Rett Syndrome was. We were being admitted and when we got up to the ward I looked up Rett Syndrome on my phone. The first thing I read was that it was a life limiting condition and I burst into tears. I think the nurses reported that I was upset because for the rest of the day I had a flock of concerned doctors offering to answer any of my questions (which really helped).

However, there is one thing – much less dramatic than either of the situations above – that always makes me well up, if not actually break down in tears. And that is to see Lil Z go under general anesthesia (GA). I’ve watched it happen three times now (twice for surgery and once for an MRI) and it never gets any easier.

Its not that I’m worried that something terrible will happen to her during surgery. They’ve been minor ops and I’ve had full confidence in the surgeons and staff. I’m not worried about the effects of GA either. She’s been under four times now without any problems, so the likelihood of something going wrong is quite low. Plus, the anesthetists at the RCH are always very thorough and have long conversations with me pre-GA, so I feel like my concerns are always addressed.

It’s not that she’s dragged away from me screaming and crying, either. I go with her into the operating theatre, get her settled on the table and hold her hand while they put the mask over her face. I don’t leave until she’s asleep, and I’m in the recovery room when she wakes up.

I think what upsets me is Lil Z’s vulnerability. Its that last look before I’m ushered from the operating theatre of Lil Z lying limp on the table. As much as my rational brain knows that I’m leaving her in good hands and that the operation is necessary, my maternal instinct wants to grab her, hold her in my arms… and run.

Every procedure Lil Z has had, she’s had QB or me there to comfort her and let her know she’s safe (even if it doesn’t feel like it at the time). Sometimes, like when she was intubated, we weren’t able to provide much comfort apart from our presence in the room (I should note I couldn’t watch that one – but to his credit, QB stayed with her). Others times we’ve been there holding, holding her hand and telling her everything would be all right.  Every procedure – apart from her surgeries.  And its that feeling of abandoning my vulnerable, unconscious baby that is the hardest thing.


Lil Z had her PEG converted to a mic-key button yesterday. Apart from being VERY unhappy about fasting before the surgery, she did very well. The surgery only took half an hour and she had her first feed through the new device a few hours later. We were able to go home in the afternoon and she’s been fine since then. The mic-key is great because it is so much smaller than the PEG with no dangling tubes, so it fits its description of being a “low profile feeding device”. I had a brief training session with the Gastro Nurse on Thursday and it is easy, and actually more versitile, to use. Even better, when she outgrows it, the “mickey” can be easily replaced – so no more surgery for feeding tubes in our future. 


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