We are approaching 1 year of feeding issues, and almost 10 months with a feeding tube. Now, I am NOT an expert or a medical professional, but I have learned a thing or two about life with a tube fed kiddo. Here are my top tips and tricks.
1. Don't be afraid of the tube.
Now this isn't really a tip or trick, but I feel it is life advice that every tube feeding family needs. In the beginning, it is easy tip toe and be AFRAID of the tube. Afraid to go out and handle tube life outside the safety of your home. It isn't as strange as you think. It isn't scary. It can be stressful at first but it really isn't anything to be afraid of. Jump right in. Make it your new normal. Embrace it as much as you can.
2. The backpack will be your best friend.
Easton has had many feeding backpacks that have adapted over our journey to fit our needs. At one point we had a medium bag to be his pump plus a diaper bag. Then we went to a big backpack to hold both pumps (tpn and tube feeding). Now, we have a tiny backpack as Easton is more mobile, he can better pull it along with him. Through everything though, we have ditched the IV pole during the day and throw everything in a backpack. You can make them fancy but I like just a hook at the top to hold a the feeding bag inside.
3. Carabiner hooks and 3M hooks EVERYWHERE.
Get them both for under $10 at target. I promise you won't regret it. I use the carabiner hooks constantly. I leave one on his back pack and hook it everywhere I can, especially when we are out and about. In the car, I hook it to the front seat so I can mess with his pump without getting out of the car. At restaurants, I hook it to the highchair rail. I hook it to his stroller. I hook it to the shopping cart. endless possibilities and adventures! There are some places where carabiner hooks aren't ideal, like his changing table or the dining room, that's where a well placed 3M hook can save the day.
4. Put the scissors down.
Now, this sounds really serious, its not. Stop cutting hole in their clothes! I made this mistake for MONTHS. I do know that when you have a PEG tube, it is much harder to deal with clothes. BUT, I slashed slits in so many onesies, it was not necessary! Now, 99% of the time I run the extension down his onesie, and out his pant leg. SO much easier and less expensive!
5. Be a strategic shopper.
Two way zippers or zippers that zip down instead of up will save your life. Target makes a few good ones. Button up sleepers are SO hard to find but they are GOLD. I would advise not to spend money on special tubie clothing,. I bought some and they just really don't work for us any better than regular, and they were SO expensive. Also, find a good stain remover, tubies just tend to puke more, its a thing. This onesie from GAP is great! It has a two way zipper and is very tubie friendly!
6. Pack your bags!
You need two bags in your car at all times. Now, if you have a medical fragile child, you might know what a GO Bag is. It is a bag that has a change of clothes, toiletries, medical record, chargers, and anything you might need for a emergency hospital stay. Keep it in your trunk, you'll thank yourself later. The second bag is your tube emergency bag. Imagine this, you are away from home, a day shopping trip. Disaster strikes, your kid pulls out their g tube, or the pump dies, or the tubing line breaks, do you have everything you need? You should. Tube emergencies require you to act fast, so be prepared.
7. Stop waking up.
This is probably the most important piece of advice I can give you. Overnight feeds are a drag. You have to wake up every 4 hours to refill the bag with new formula... or do you? One of the most amazing purchases I have ever bought was a pack-It lunch box. The whole box goes in the freezer. At night, place the pump bag inside the insulated lunch box and you can fill the bag up for the whole night. Hello sweet sweet sleep.
8. Conquering the incline.
A lot of tubies have reflux or vomiting issues. Sleeping can be a challenge while they are on incline. Nothing is worse than waking up to a puking kiddo laying at the bottom of the crib wedge. There are many good solutions depending on age and level of wiggliness (that's an official measurement right?). For young or not very wiggly kids, a danny or tucker sling work well. The help strap them up on the wedge and not slide around. For wiggly babies or babies who do not like being strapped down anymore (Easton) the solution is quite simple, pool noodles! Sliding a few pool noodles under the crib sheets in the shape of a "U" prevents them from sliding down the wedge.
9. Portion it out.
Every morning, I mix 24 hours worth of Easton's high cal formula and portion out six 6oz bottles, mixing the necessary additives into each. Each has a label of the time that it gets poured into his feeding pump. For the rest of the day, I don't have to think about it at all. It also makes travel or impromptu trips a breeze.
10. Prep the meds as much as possible.
In the morning, Easton gets 5 different medications. And that happens multiple times a day. Do you know how long it takes to draw up those meds when you are chasing a kid? Too long. It also makes it hard to get meds done at the same time everyday, consistently. So, I predaw every single med I can. They are kept in separate labeled jars and I keep the bottles for details if needed. It is way easier to grab from a jar than individual draw meds. (Check with your pharmacist first to make sure your meds are safe to do so). Again, makes travel easier too!
11. Routine is life.
Now this one doesn't take too much explanation. But you and your kid will thrive off a routine. Wake up, new pump bag, formula, meds, tube site cares, get dressed... continue on. You wont miss things and your head will stay on straighter. Missing site cares once might not seem like the end of the world, but it is a bad habit that can end in infection. Doing meds at the same time everyday can increase the effectiveness of some.
12. Get organized.
Being a tubie comes with a lot of supplies. I have two areas in my house for medical supplies. I have a large cabinet with all the supplies. I also have a small cart that is in my living room that has supplies that I use a lot along with diapers and wipes. Having everything you need in close reach helps so much! Keep medical records organized as well.
13. Learn how to unclog your tube.
Staying out of the ER at all cost is something you will learn how to do as a medical parent. And a clogged tube can send you to the ER if you don't know how to deal with it. There are many ways to unclog a tube. My personal favorite is a push-pull suction technique with warm water. You can also use products like Clog Zapper. I have had good luck with this too. We fondly call it Tubie Liquid Plumber. I have also been advised to use coke or carbonated beverages, we have never tried this though some swear by it. I have unclogged tubes in cars, at 3am, while camping, at doctors offices- you name it! You'll get to be a pro.
14. Venting and Self-Priming
Learn how to vent a G tube. If you have a tubie and don't know how to vent. Learn ASAP. Learn how to manually prime a feeding bag. It'll save you. Ask me, I can explain. Ask your doctor, a nurse, there a videos on YouTube, just learn it! That's all I'll say about that.
15. Buzzy Bee will save your ears.
Buzzy Bee is a small vibrating bumble bee that you can freeze. It helps desensitize the area before a injection or draw or after an injury. Easton gets many blood draws a month as well as two injections everyday. We cant have a meltdown every time and buzzy bee saved us as Easton got used to it! No more screaming thankfully. Get yours here: https://www.amazon.com/dp/B004UMOWBM/ref=cm_sw_r_cp_api_i_xpEgCbTE0E8HA
16. Teach others, build your team.
My family is my lifeline. They know the basics of Easton's medical issues and tube feedings. It give me the ability to take a break or do anything without baby. I also have a family who also has a kid with a tube who will be nannying Easton a few days a week. Having other who are experienced with special medical needs to help or just relate to is a life saver. My little community of tubie mommas- I love ya!
17. What works for one will not work for you.
Every kid is different and every tubie is extra unique. What site care works for one will be terrible for another. What feeding schedule works for me won't work for you. What works for my organizational needs won't be right for you. It is all trial and error for what works for you!
18. Be adaptable.
Just as what works for one might not work for all, what works for you today might not work tomorrow. Being a tubie means getting really good at adapting. Easton becomes allergic to new things, tolerates something one day, doesn't tolerate the next, etc. However, this makes everyday interesting!
Even though life with a tube fed kiddo is different, don't treat them differently! A tube doesn't keep them from living up to their fullest potential. Adapt, find your tricks, and live life!
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