Cleaning your tubies Stoma!

When Mel first had her feeding tube placed I was super intimidated by it! Up until that point I had never seen a G tube in person or even a stoma of any kind. And I did not want to hurt my little nugget by doing something incorrectly. Since then I have grown very comfortable with Mel's site and in this post I will show you and explain how I clean and dress her site daily!

I would like to preface this post with the fact that I am not a doctor and I have had no formal medical training. Everything I know is from my own research, being shown by medical professionals, and what works best for our family. If you have any concerns about your child's stoma or button I suggest you consult your child's physician.

I clean Mel's stoma every night before bed and also every time I give her a bath. This is the first step I take in her nighttime routine so that I can insure my hands are freshly cleaned every time!

Gather every thing you will need and have it laid out beside you so it is easy to reach. I don't like to leave the button exposed to go grab something I forgot because Mel loves to pull on it! if I do forget something I cover her button back up with her onesie and then go grab my forgotten item!

The Items I use every button change!

Q-Tips, baby soap, warm water, Desitin, 2x2 split gauze and a fabric tube pad. 

 WASH YOUR HANDS! Your child's stoma can become infected just like any other opening into the body. Stoma infections can be very serious and lead to complications. 

• First I take off the dirty fabric tube pad and split 2x2. I just set these to the side for the time being.
• I then dip a Q-Tip into the baby soap and I clean around her stoma. I make sure to get all the "tube boogers" loosened up.
• Then I take a clean Q-Tip and I dip it into the warm water and wipe around the stoma to further remove any crusties and make sure the bottom of her button is clean.
• After it is clean I take a dry Q-Tip and make sure I dry off the whole area really well, sometimes this takes more than one Q-Tip.
• Next is the Desitin or whatever barrier cream you use. I like to pull our Desitin up in a 3 mL syringe so I can "pipe" it around Mels stoma! is is so much easier and way less messy!
• Place the clean 2x2 around the stoma.
• Finally place the clean fabric tube pad over the 2x2.

I like to use a 2x2 and a fabric tube pad for a couple reasons. Desitin is some crazy stuff and it is hard so wash off of our tube pads. Also I feel like using both pulls Mel's button up to where it is snug and it does not move much. 

Desitin or barrier cream is used so that if the stoma leaks stomach acid or the button leaks formula/food the healthy skin around the button will not get burned and irritated. 

Ever since Mel was converted to her GJ tube she has had a decent amount of Granulation Tissue around her stoma. This is a very common thing with stomas and some cases are worse than others. Granulation tissue is not painful but it is very very vascular so it bleeds very easily. Some doctors and parents like to treat granulation tissue with Silver Nitrate. Which looks like a long matchstick with silver on the tip. When the silver touches skin it cauterizes the tissue. A lot of people have had great results with silver nitrate and had minimal discomfort. When Mel was about 7 months old we went to a GI appointment and he used the silver nitrate. Mel screamed like she was in pain and her stoma was sore and irritated for days afterward. Also I saw little improvement with her granulation tissue. There are other ways to treat granulation tissue if needed. (Always consult your child's doctor about any problems with your child's stoma or any treatments.)

Steroid Cream- We have Triamcinolone cream that we were prescribed for granulation tissue. this cream can only be used for a few days at a time every couple weeks.

Alum & Calmoseptine ointment- Alum powder can be purchased from the grocery store in the spice isle and the cream from the pharmacy area. These 2 items can be mixed into a paste then placed around the stoma. I have yet to try this method but I will be soon and I will update on how it works!

Essential oils- I have read that a solution of 1 drop Frankincense, 1 drop Lavender and Coconut Oil are good to help heal granulation tissue. I have been using this method on Mel for 2 weeks now and I see slight improvement but not much. I wanted to try this method as it is more natural. I just placed a drop of each essential oil in a 10mL roller bottle then filled the bottle with fractionated coconut oil. ( I saw no improvement with this method, I will be trying the Alum and Calmoseptine soon!)

I tried to get pictures as I was going through the steps but umm wrestling a 16 month old while protecting a G button and trying to take pictures is NOT easy! I will work on getting pics and will add them if I am ever successful!

As always if you have any questions put them in the comments and I will get back with you!! 

Hug your little people tight and have a big ol' glass of wine ladies!!

Love until another Day,
Shelbi

The questions, stares and downright ignorance around feeding tubes!

   When you are out with your child, they have to eat. Just like any other human being has to. The difference is that some of our children eat a little differently. 15 months into this life I am still really surprised by the amount of adults that will blatantly stare while I am feeding my daughter.

    Last night Mel and I went to eat at our local Cracker Barrel with my parents. We arrived at the restaurant at 6:15pm and it was time for Mel's dinner. I know that feeding tubes are different and that people do not see them everyday and they are curious, I get that. But I am sitting there with my family and my daughter trying to eat while also pushing Mel's food via syringe and at least 2 tables of ADULTS were just sitting there staring. not trying to be nonchalant or anything just legit staring.

   Since Mel is only 15 months old she does not notice the looks, but someday she will. And it hurts my heart that someday I may have to explain to my daughter that she is a little different and that sometimes rude people don't know any better.

   I have had a few people ask me what the tube is coming from under her shirt and let me tell you I just want to hug these amazing people. They want to be educated, they want to know so that if they see another person with a tube they will know that it is instead of staring and assuming there is just something wrong with the person. I love explaining Mel's tube, why she has it and telling our story. I want to advocate for not only my daughter but all the tubie children and adults in the world. I want to be a part in dissolving the stigma around feeding tubes and differences in general.

   Some people ask stupid, rude and disgusting questions. When Mel was about 3 months old my mom and I were at the grocery store. At the checkout the cashier saw Mel's tube and promptly asked "Whats wrong with her" with a disgusted look on her face. I explained that it was a feeding tube and the lady responded with "poor baby." Umm no birch. first of all there is nothing "wrong" with my baby, she is perfect and we are blessed that she is even freaking alive. Second she is not a "poor baby" she gets every single nutrient she needs through this tube and she is growing like a champ! Although I said these things in my mind I still cried when we got out to the car. That was the first time something like that had happened and I couldn't believe someone would be so callous about a beautiful little girl.

   There have been a few times since then that stares and comments have really gotten to me. But as time goes on I am more educated and able to really explain feeding tubes and also as I get older I just don't really give a shit about what people think. If you are new to tubie life, people will hurt your feelings, the stares will bother you and would will wonder if it will ever get easier. And I am here to say it does get easier. Yes there are times that I just want to punch people in the throat but for the most part I either try to blow it off or I try or educate that person.

   Our children are perfect gifts from God and we know that. That is all that matters. But we are human, we have feelings and most of all we know that our children have feelings and Mel's are what I am most concerned about in this situation.

    Have you ever had a situation like this happen to you? I would love to hear what your thoughts are on this topic and how you deal with less than couth people. 

As always kiss those precious miracles, say a prayer and enjoy your evening wine!

Love until another day,
Shelbi