Mistakes and Five Tips to Avoid them or Minimize their Impact

Mistakes and Five Tips to Avoid them or Minimize their Impact

Everyone makes mistakes, and we all know that. We’ve been told a million times, “everyone makes mistakes, don’t beat yourself up over it.” That doesn’t quite help at the moment though, because the stakes are a bit higher than they’ve been in the past.

Forgot to turn on the pump last night? That’s less calories a continuously fed child is going to get, and it’s not hard to do. Even more common, your child rolls just the wrong way and disconnects himself from the pump. He doesn’t wake up because he’s exhausted, and you have no idea. When one of you finally wakes up, the bed has gotten all of the feeding and some stomach acid. You try to prevent it, but nothing is fool-proof. Besides, you can’t connect it too tight because it needs to release if your child gets tangled in the tubing!

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Information to Share with Family Members and Friends

Some tubie parents are fortunate to have understanding family and friends. The love and support that comes with this arrangement is beyond value. For most of us, that doesn’t seem to be the case. The vast majority of parents with tubies are repeatedly told how much better of a job others could do if they were in our position. There are many things said so awful I don’t feel comfortable sharing them. No one deserves to be treated like this, much less parents of a child with a serious medical condition.

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Benefits of Joining a Support Group

Support groups are one of the most helpful things I’ve found to keep my sanity. There’s nothing quite like sitting down and talking through your problems with people that deal with the same issues you do each and every day. I vaguely remember what it was like before I joined them, but mostly its a blur. I knew nothing about tube feeding when they placed my son’s nasal gastric (NG) tube in the hospital. If not for our home care nurse coming once a week I would’ve been completely and utterly lost.

A few people have told me I appear to be handling things really well and have my life together. I thought about why, and it’s because of my support network I’m able to stay calm and keep going. Without them my sanity would scatter to the wind within a matter of days.

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Eating Out with a Tubie

Waiter/Waitress: “Would you like a meal for him/her?”
Parent(s): “No thanks, he already ate before we left home. He’ll share with us if he wants something.”

This is an all too familiar experience for parents with children that either can’t or don’t want to eat. Continue reading

RQ, What Health Problems is Your Son Struggling With?

I was recently asked by a reader what our son is struggling with. I had avoided discussing it because I didn’t want to burden anyone with the details. I wasn’t sure if the specifics would be unnecessary, and I didn’t want to make anyone uncomfortable. I realize now that it would help people understand where I’m coming from if I shared more about his situation.

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