Life on the head of a pin

The meds Lil Z is currently taking twice a day

The past week has given me a new perspective on the description of Lil Z as “medically fragile”. Before, I always thought of this as being mainly due to the fact that even a slight cold could trigger a seizure. But now I’m learning it’s so much more.

We spent the weekend in the hospital, after Lil Z once again stopped taking all food or drink. Well, I say food or drink like she has a varied diet, when in fact since her last visit to the hospital, she’s been on a diet of PediaSure – a meal replacement drink for infants. Once again the NG tube went in and they rehydrated Lil Z and gave her a good feed of PediaSure. Her paediatrician (“the Prof”) and I were both convinced that she wouldn’t take a bottle as long as she had the tube in, so on Sunday the tube came out and we went home to try to persuade Lil Z to eat.

So far, she’s not being persuaded. I’m just about managing to get enough into her to keep her on the right side of dehydration, but that’s about all. The stress and worry over it is overwhelming, not helped by the fact that I set my alarm to get up every few hours at night to try to feed her (she eats best when sleepy), so I’m sleep deprived as well.

She’s not being stubborn – this isn’t about food refusal or food aversion. She has a cold which has caused secretions to pool in her throat. A healthy person would simply swallow them, but as Lil Z has a poor swallow, she’s not able to. So, the secretions sit there in her throat, and when she tries to suck on a bottle, it gives her the sensation of choking, which makes her cough, which makes her gag, which makes her vomit. So, her refusal to take a bottle is in effect a misguided attempt at self preservation.

It has also made me realise what a precarious life she now leads. Even a minor cold can land us back in the hospital. And when I say minor, I really do mean minor. She hasn’t had a temperature or a runny nose nor has she shown any signs of being unwell. Something I probably never would have even noticed in Vegemite has landed Lil Z in hospital, and unless a miracle happens, is going to send her back there very soon.

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2 responses to “Life on the head of a pin

  1. Oh dear Sarah, life sounds very hard for you at the moment. Sending lots of love your way. X

    Like

  2. Yes, and love from Gloucestershire too. I remain in awe. Try and find just a few moments of selfish time. X

    Like

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