Tinleigh’s tube has become infected for a second time. She starts with bowl issues then it turns into an infected tube. We’re doing some tests and hope to find some answers. I want to share the picture of her tube for others wondering what it might look like and if someone is trying to figure out if their tube might be infected.
This was right after her bath. I keep a thin single layer of gauze around it and change it a few times a day. It gets very crusted up with yellow and red tinged grossness. As you see the area around the tube is very red. Gage’s tube area sometimes becomes red as well. The difference is where her’s is red its very hard underneath. While his stays soft. On the right, you can’t see it, granulation tissue has sprouted out in the last 12 hours. If you notice also her belly button area has become red. This happened last time as well. It’s hard to tell but the entire area is swollen. Her tube is very tight against her skin and actually leaves an indention.
She is able to hook up and feed. It upsets her though because she anticipates it hurting when I touch it. Once she’s hooked up though she’s fine. Usually once the antibiotic kicks in she’s able to wear her back pack around as usual. When it’s super tender she prefers to sit on the couch with her back pack beside her.
I hope this helps anyone wondering if their tube is infected! I would also love to hear from anyone that has experienced tube infections. Having two back to back is very frustrating, along with not knowing why she’s having bowl issues along with it. Maybe someone has some insight for me.
Let’s play catch-up!
Monday, February 10
Share your tips for feeding on the go or in public! Where have you tube fed? Talk about the most unexpected places you’ve done tube feedings.
We have tube fed just about everywhere and I really don’t think it’s odd. It’s just how it is. We use backpacks so no one really knows that the kids are hooked up. Of course Tinleigh’s is tiny and adorable, she gets lots of comments about it. I just smile and say thank you. We feed at stores, in the car, school, the movies, while playing inside and out, at other people’s houses, the zoo, airport, I would say just about anyplace we’ve ever gone.
Tuesday, February 11
Show how tube feeders can do what they love to do. Share what obstacles you or your child have overcome!
I think the biggest thing Gage had to overcome was how he felt about being hooked up at school. It was really no problem. None of the kids asked him why he wore his backpack during lunch. It was probably more the anticipation of what others would say. Other than that Gage does the same stuff he did prior to the tube. As does Tinleigh so far. Gage has played soccer, basketball, gymnastics, swimming lessons, boogie boarding in the ocean and played like a boy outside all summer long. The tube hasn’t slowed him down a bit.
Wednesday, February 12
Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?
This one makes me laugh. It seems we constantly have a challenge. I can’t exactly say that anything makes it easier. I am thankful my kids are pretty easy going. I just handle what ever comes our way and they don’t really know any different. I know that our lives aren’t ordinary and all you can do is accept that fact. A normal day to us may seem crazy to anyone else. We don’t know any different though. We don’t dwell on bad days. They come and they go. In the last month we have had g-tube surgery canceled, rescheduled, recovered, developed freak hives and had allergic reactions, had the flu, I had bronchitis, had a tube infection, caught strep and had countless doctor appointments. Oh, and I’m VERY pregnant. I keep things as organized as I can so I can grab and go on a whim. I leave myself notes so I don’t forget anything including feeding times and meds. I still have bills to pay and regular dinners to make just as any other mom does. I clean my house and do laundry. I have a cleaning schedule I try to stick to and I will admit I’m a bit ocd about some things. But I have to be to keep this house running as I need it to. I’m also a wife, and as all marriages go, that takes work too. I just do it, it’s my job. I do know that we have lots of prayers sent our way and tons of support, that definitely helps our journey! Thank you everyone.
Thursday, February 13
What are your tube feeding hopes and dreams for you or your child in 2014? What successes do you want to build on?
For Gage my prayers are that he continues to add foods successfully with clear scopes. I also hope that he will start to eat more. I know he wants to get rid of the tube as soon as he can. I know he would also love to have a taco or hot dog. I pray he continues to stay happy with life and doesn’t take to depression about food as many kids with EoE do.
I want Tinleigh’s body to calm down and stop being so over reactive. She’s become very sensitive to just being around some foods these last few months. She can’t even sit at the kitchen table with out breaking out in hives just from touching the table. I also pray her fist scope after getting the tube is clear so we can start to successfully add foods to her diet.
Friday, February 14
Share the tubie love! Share pictures of you or your child living life to the fullest, or pictures showing off your tubie love gear. Today is about living and loving life.
I recently did a blog on this as Gage passed his one year mark with the tube.
I will share some pictures of Tinleigh with her tube! She recovered then got sick and then sicker so she hasn’t done a whole lot yet as far as living her little life to the fullest. The days she feels good though nothing holds her back!
I was very excited when I learned the theme this year for feeding tube awareness week “Nothing can hold us back”. I really feel it goes right along with my blog LIVING the Allergy Life. We are living and though I’ve been slacking a lot these last months I do plan to continue to show that allergies, asthma, EoE and feeding tubes don’t hold us back. We will forever keep on LIVING!
As you know I have two tubies. So we are definitely spreading awareness this week.
Today’s topics are: Why does my child have a feeding tube? What positive benefits have come from tube feeding?
Both of my kids have feeding tubes because they have Eosinophilic Esophagitis and their bodies have become so reactive to food we had to remove it all from their diet.
Will they ever eat again? Yes. We will trial foods and continue scoping and taking biopsies of their esophagus to keep the disease under control and figure out what their trigger foods are. Gage’s current safe foods are: blueberries, rice, cocoa, strawberries, lemons, oranges, tapioca, fin fish, green beans and black olives. His trials currently are cherries, pork and tomatoes. Since Tinleigh has just gotten her tube a few weeks ago she is only allowed smarties, sweat tarts and pixi sticks. Mainly sugar candies with no corn syrup.
So how long will they have their tube? It is unknown. It all depends on how their food trials go. They need to get enough food back into their diet that they can have the nutrition they need with the disease under control. It could be three more years it could be life long.
What positives have come from having the feeding tube? First off my kids have grown! Since DEC 2012 when Gage got his button he has gained 13 pounds. That’s huge for a five-year old. He is definitely benefiting from having a tube. Tinleigh hasn’t quite had her tube for a month yet and she’s already gained a solid two pounds. I’m sure getting the nutrition they need has helped brain development as well.
A few positives for myself as their mom: I don’t have to figure out what to feed them everyday which was very hard on such a limited diet. I also don’t have to pack a million snacks and food if we go anywhere. Now it’s just a bag of formula.