All I want for Christmas…

IMG_6275

Her expression says it all

Operation Keep Miss Z Out of the Hospital is a go!

It all started a few days ago. Miss Z starting waking in the night with a cough. During the day she was excessively sleepy and when she was awake, she was a world class grump.

So, on Friday I took her to see the GP, who confirmed what I already suspected – her chest sounded crackly on the lower right side and she had a slight wheeze. The GP prescribed antibiotics and said that with luck, we’d be able to nip the latest infection in the bud without a stay in hospital.

Miss Z has been hospitalised twice in recent months for mystery infections that appeared on her blood work but not anywhere else. It has been assumed that it is something chest-related, but it has never been more specific than that. But symptoms have been almost more worrying than the infection – she gets so lethargic that she’s unresponsive even to pain, she vomits so much she becomes dehydrated, and as a result of the dehydration, her sodium and potassium levels get too high or low.

There isn’t much I can do about the lethargy, but I’m trying to head off the dehydration by giving her rehydration fluid as well as lots of water. So far her vomiting hasn’t been too bad, so I’m winning the hydration game.

I’m also giving her nebulisers every day. She gets Ventalin, which opens her airways, and Hypertonic Saline, which makes her secretions (i.e. the goo in her chest) thinner and easier to cough up. Miss Z hates her nebs, but I’m hopeful that they’ll help us stay out of the hospital over Christmas.

Despite launching Operation Keep Miss Z Out of Hospital, I’m keeping my expectations realistic that we could still end up there. After all, it is Christmas – and Miss Z has a bad history when it comes to Christmas. We’ve been in hospital just before Christmas, we’ve had paramedics at our house on Christmas Day, and since she was born, Miss Z has never really had a good Christmas Day.

Plus, the stakes are extra high this year because I am planning to visit my family in the US after Christmas – taking Vegemite with me. QB will stay at home with Miss Z, who isn’t able to travel. Last time we tried this, Miss Z ended up in the hospital, broke her leg and got her PEG surgically inserted. I spent my trip – which is meant to be a bit of respite for me – feeling guilty and anxious.

We have requested to defer Miss Z’s G-J tube placement surgery until after I return – even though the Gastroenterologist had said he could probably do it before Christmas. It didn’t seem like a good idea to fit in something like that right before I left – leaving QB and our care workers to figure out how the new feeding system works. However, the irony wouldn’t be lost on me if she ended up getting her G-J tube while I was away… After all, it happened last time!

(Yes, we’re getting the G-J tube. The decision turned out easier than expected since the surgeon didn’t think Miss Z was a good candidate for the fundoplication.)

So, keep your fingers and toes crossed for us that Operation Keep Miss Z Out of Hospital is a success. We are trying our hardest.

 

 

 

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