Try as I might, I probably won't be able to convince you that tube feeding is all puppies and rainbows. Maybe it's because I look like I haven't slept since George Bush was President (I I don't mean W). Maybe it's because my Preschooler is more familiar with the Children's Hospital logo than he is with the iconic Golden Arches. Or maybe it's just that you've actually read this blog before.
There's so much to celebrate as a Tubie family - but I'm neither ashamed nor afraid to admit that it's hard.
Emotionally, it's very difficult to live with the knowledge that your child is medically fragile. It's a thought that never leaves you, no matter what you're doing. My husband and I share a love of absurd post-apocalyptic television shows - think The Walking Dead. As we watch the characters roam the zombie-laden earth, thriving on practically nothing, I can't help but think - "Our son wouldn't survive that." During a recent snow storm, as friends and neighbors mourned the loss of electricity and heat - my only thought was how we'd go on feeding Aidan if we weren't able to charge his pump. Our own needs for heat and food and shelter were a distant afterthought - always second to keeping Aidan fed.
Practically, though, we have hit our fair share of roadblocks. I think they're very common - as in, Tubie families around the world experience the same handful of problems. It's comforting to know that there's really no issue we can encounter that someone else hasn't already solved, and probably quite brilliantly.
There are so many tips, tricks, and gadgets that have made our lives easier - I wish I had the time to share them all. But here are a few - the greatest hits, if you will. A couple of products, a couple of resources. I always welcome the chance to talk more - please, please reach out if you have questions!
1. The Corisafe. It deserves the coveted #1 spot, hands down. I've blogged about them before - essentially, it's a lockbox for your tube connection that prevents tiny hands from disconnecting at inopportune times. It's $25 insanely well spent, and they offer a 20% discount if you purchase more than 1 at a time. They will custom make your Corisafe to fit your exact tube/extension setup. And the people behind the scenes are pretty awesome. Also? It's really cute to hear a three-year-old say "Cowisafe."
2. Tubie Friends/Mini Buddy - These provide two really vital things. A "just like me" friend for a child who has something outside of the norm happening with their body, AND a fantastic teaching aid for family, friends, sitters, teachers, classmates, playmates, and strangers on airplanes.
3. Tube Pads - At the hospital, we are always given gauze, which is fine (and free) - so that's what we used early on. It looks like this.
One morning, I found Aidan's tube gauze-less. O-kay. Where'd it go? Ah, there it is, IN HIS MOUTH. Gag. We don't use gauze anymore, for hopefully obvious reasons. But a naked Tube is a sad Tube - without something around it, we get more granulation tissue (bad news) and irritation.
I told you before - all Tubie problems have brilliant Tubie solutions. Enter the Tube Pad:
We love them. We have ten zillion of them. Primarily from SuperBellies (http://superbellies.storenvy.com/) but we also have a few from Patchwork Peddler (http://www.patchworkpeddler.com/). A quick visit to Etsy reveals that you have options galore, and you'll pay anywhere from $1 to $5+ per pad.
4. Exchange Groups - There are so many out there - I've found lots on Facebook with minimal effort required. Groups of people who have supplies (extra button kits, extensions, feeding bags, stoma care items, tapes, formula, and so much more) that they no longer need - happy to pass these items along to another family in need. I've been on both sides of this - frantically looking for supplies when our DME company was delayed - AGAIN - or looking for a way to ensure that medical supplies are used by those who desperately need them, even if I don't. Get yourself into these groups, pronto!
5. Research & Information groups - It is so easy to get caught up in your own day-to-day and never to take a step back to see what the community as a whole is learning and doing. My favorite groups for our particular issues are APFED and Kids with Food Allergies - each of which host an annual get-together that I'm trying to make a habit of attending. Let's not forget Feeding Tube Awareness, too!
At the end of the day, what really makes the journey easier is knowing that it's all for this guy. He's worth it (and he knows it)!
There's so much to celebrate as a Tubie family - but I'm neither ashamed nor afraid to admit that it's hard.
Emotionally, it's very difficult to live with the knowledge that your child is medically fragile. It's a thought that never leaves you, no matter what you're doing. My husband and I share a love of absurd post-apocalyptic television shows - think The Walking Dead. As we watch the characters roam the zombie-laden earth, thriving on practically nothing, I can't help but think - "Our son wouldn't survive that." During a recent snow storm, as friends and neighbors mourned the loss of electricity and heat - my only thought was how we'd go on feeding Aidan if we weren't able to charge his pump. Our own needs for heat and food and shelter were a distant afterthought - always second to keeping Aidan fed.
Practically, though, we have hit our fair share of roadblocks. I think they're very common - as in, Tubie families around the world experience the same handful of problems. It's comforting to know that there's really no issue we can encounter that someone else hasn't already solved, and probably quite brilliantly.
There are so many tips, tricks, and gadgets that have made our lives easier - I wish I had the time to share them all. But here are a few - the greatest hits, if you will. A couple of products, a couple of resources. I always welcome the chance to talk more - please, please reach out if you have questions!
1. The Corisafe. It deserves the coveted #1 spot, hands down. I've blogged about them before - essentially, it's a lockbox for your tube connection that prevents tiny hands from disconnecting at inopportune times. It's $25 insanely well spent, and they offer a 20% discount if you purchase more than 1 at a time. They will custom make your Corisafe to fit your exact tube/extension setup. And the people behind the scenes are pretty awesome. Also? It's really cute to hear a three-year-old say "Cowisafe."
 |
| http://corisafe.com/ |
2. Tubie Friends/Mini Buddy - These provide two really vital things. A "just like me" friend for a child who has something outside of the norm happening with their body, AND a fantastic teaching aid for family, friends, sitters, teachers, classmates, playmates, and strangers on airplanes.
  |
| http://minibuddy.org/, http://www.tubiefriends.com/ |
3. Tube Pads - At the hospital, we are always given gauze, which is fine (and free) - so that's what we used early on. It looks like this.
 | |
| Gauze |
 |
| Totally lacking in pizazz |
 |
| Stylish. |
4. Exchange Groups - There are so many out there - I've found lots on Facebook with minimal effort required. Groups of people who have supplies (extra button kits, extensions, feeding bags, stoma care items, tapes, formula, and so much more) that they no longer need - happy to pass these items along to another family in need. I've been on both sides of this - frantically looking for supplies when our DME company was delayed - AGAIN - or looking for a way to ensure that medical supplies are used by those who desperately need them, even if I don't. Get yourself into these groups, pronto!
5. Research & Information groups - It is so easy to get caught up in your own day-to-day and never to take a step back to see what the community as a whole is learning and doing. My favorite groups for our particular issues are APFED and Kids with Food Allergies - each of which host an annual get-together that I'm trying to make a habit of attending. Let's not forget Feeding Tube Awareness, too!
 | |
| http://community.kidswithfoodallergies.org/pages/community |
 |
| http://apfed.org/drupal/drupal/index.php |
At the end of the day, what really makes the journey easier is knowing that it's all for this guy. He's worth it (and he knows it)!
No comments:
Post a Comment