Highs and lows of a feeding tube

It’s been a few weeks now since Benjamin got his mic-key button fitted. The operation went smoothly and we were home in a couple of days. Beforehand, I asked “will this give me my happy little boy back?” With all the research on earth we weren’t going to know the answer to that question without trying it. Here’s what we’ve found out so far.

On the plus side…

  1. Benjamin is thriving, piling on the pounds, filling out, and growing out of his clothes.
  2. We don’t have to spend all day just trying (and failing) to squeeze enough calories into him orally.
  3. We’re all getting (a little bit) more sleep. There are still plenty of other reasons for Benjamin (or Jackie) to get us up in the night, or to keep us up late, but at least hunger isn’t one of them.
  4. The button hasn’t (touch wood, cross fingers, do a dance to the patron saint of gastrostomies) come out, so Benjamin hasn’t had an A&E admission since.
  5. It’s easier to get him to take his medications.
  6. I feel slightly less of a fraud for claiming carers’ allowance and DLA, now that he has something obviously “medical” for me to deal with.

On the minus side…

  1. I can no longer bring him into our bed to comfort him. At least, it takes a lot more effort to switch off and disconnect everything, and later reconnect it all; not ideal when you and he are both knackered and you just want to scoop him up and take him straight under the duvet.
  2. Overnight feeds mean over-full nappies, so more often than not I have an uncomfortable boy and a heap of bedlinen to wash in the morning.
  3. It’s a tiny bit more hassle feeding on-the-go. And we get more funny looks.
  4. We have a lot more stuff to travel with. Gone are the days when it was just me and my breasts. Now we have pumps, night milk, day milk, giving sets, extension set, syringes, more syringes, spare buttons, stuff to wash it all with, and gallons of cooled boiled water, on top of all his medications and the usual nappies and stuff. Holidays by train are looking increasingly like a thing of the distant past. But it could be worse: we don’t, like a lot of people, have to carry oxygen cylinders and sats monitors and suction-whatevers. Yes, it could be a lot worse.
  5. It looks like it’s for good. Basically, his tummy is full all the time. If we’re going to keep giving him half his calories overnight through a tube, I fear he’ll never be hungry enough to learn to eat properly in the day. So is this it? Will he be tube-fed for the rest of his life?

So, on the whole, a big success. Refer to plus-point 1: Benjamin is thriving (his other health problems notwithstanding). We are, slowly, getting more smiles. It would take an awful lot more negatives to outweigh that. And therefore to minus-point 5: Will he be tube-fed for the rest of his life? Who cares?

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s