Mango Sauce

One of the many tubes invading C’s little body during his illness was a feeding tube. He had fluid support and meds through IV lines, but needed additional nutrients soon enough. I can’t remember if the feeding tube was put in at the same time as all the other tubes (that is, during the code) or later.

Regardless, it was there, and its removal, along with removal of other tubes and pieces of equipment from his room were significant steps toward and signs of recovery.

However once the feeding tube was removed, we had another issue to address: C wouldn’t eat. He simply refused.

Immediately after the tube was removed, it became apparent that C was exerting the one bit of control he had over his situation. After being poked and prodded around the clock, having painful things done to his incision from the surgery and wounds from chest tubes, and a host of other things, what he put into his mouth was the only control he had left.

The bribery started immediately, and even that didn’t work most of the time. We had food brought in from outside – just about anything, including McDonald’s – but he’d take one, maybe two bites and stop.

We had Child/Life Services get involved. Their staff came down to talk to him about how choosing to eat was choosing to recover, and things like that, but it didn’t work.

His eating finally became an issue in release plans. The staff did not want to release him until he was eating normally, or close to it. Even this barely had an effect. We dangled home in front of him and it was maybe two bites from the food service tray – not quite enough to satisfy the PICU staff.

The more eating became an issue for the people around him, the more C dug in his heels.

Finally, the PICU staff agreed to let him go home, with a promise from him (not fully given, but implied) that he would eat at home.

On the first day at home, C continued to pick at his food. I was stressed – so happy to have him home, but scared to have him there at the same time, without the 24-hour medical support – and C still had a PIC line in his arm for some continuing IV meds. I really tried not to react too much about it in front of C, but I am sure it was apparent. It felt like feeding him was the only thing I could do competently, but his non-eating made me feel like I couldn't support him in the right way.

As I think about it now – and even as I thought about it then – I understand C’s need to have some control over his situation. I’ve reacted similarly in stressful situations. Yet I was also at once frustrated by his inability to see the bigger picture (his overall health) and impressed by his determination – though perhaps I would have liked to see that determination applied differently.

About a day and a half after he arrived home, he said he’s eat if we had some mango sauce from Trader Joe’s (it's like apple sauce, but made with mangoes). There was no Trader Joe’s near us at the time, so buying Mango Sauce had long been a special treat I’d pick up if I was near one. I immediately called my sister-in-law, who was scheduled to come for a visit with her kids later that afternoon, and asked her to please pick up a jar or two from the Trader Joe’s near them. She arrived with five jars, I believe.

And C ate.

C ate all the mango sauce over the next couple of days and continued to eat. We’d broken through the barrier.

We now have a Trader Joe’s near us and every time I go to pick up dried fruit or nuts or some other treat, I see the jars of Mango Sauce. Sometimes I buy a jar or two. It’s another one of those day-to-day reminders of how lucky we are to have healthy, strong, growing kids.

I asked C once recently if he remembered all that, the not eating and then only eating mango sauce for a while. He doesn’t. But he still loves mango sauce.