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Public display of G tube grossness

We are on a bad streak this week. That darn G tube keeps getting pulled out. 3 times in about 5 days, to be inexact. I've forgotten the details of the first one other than it happened. I think she was just wearing a diaper and the extension tube got caught on a kitchen chair she was climbing on and the tube got pulled out. The second time was pretty much the same. I was upstairs, Donny & the kids were downstairs, the tube got pulled out, and Raya walked around for a couple minutes leaking an orange mixture of formula and a smashed cracker she found in the bottom of her sister's lunch bag (gross, I know) before somebody finally noticed it. Then I put the tube back in with one hand while I used the other hand to try and keep Raya from sticking her finger in the hole. I'm sure it was quite the sight to see but my camera was upstairs and I was out of free hands anyway.

Today takes the cake though. This was the first time it's ever happened in a location other than our house. The kids got out of school early today so I had to wake the girls up from their naps (for cryin' out loud, WHY do they always take such good naps on early out days?!?) to go pick the kids up at the bus stop. Raya was connected to her feeding pump and I was in a hurry since I had waited until the last possible minute to wake them up, so I didn't bother to look and see if the pump was actually running or if it was between intervals. Since Kaida was still groggy and neither one of them had shoes on, I rolled the windows down & left them in the car (don't worry, it was 70 degrees and I was 20 yards away) while I rounded up the kids.
I was talking to a friend about some issues she's having with her insurance company (since I've spent so much time dealing with insurance crap) and Ashtyn asked me if she could get the girls out of the car. I told her not to, and not 2 minutes later, she yelled, "MOMMY! Something happened!" so I turned around and went to see what was going on. When I got to the car, Ashtyn had a panicked look on her face and Raya was standing on the sidewalk with formula GUSHING out of her stomach (she had JUST finished a 225ml feed about 10 minutes before). Ashtyn was babbling something about how she had accidentally gotten the tubing caught on the seat of the car and the tube got pulled out. (I restrained myself from getting upset with her for disobeying me since she was already freaking out anyway.)
It only took a few seconds for Raya's clothes to be soaked with whatever had been in her stomach. I didn't want my car to smell like that so I put her on Cole's jacket on the picnic table, took off her wet pants, and used them to soak up what was coming out while I dug around in my bag of medical supplies that was in my purse trying to find the right syringe. I knew it wasn't there though. It was in a plastic baggie with a spare G tube pinned to the bulletin board in the kitchen in case there's ever an emergency while she's at home with the respite provider. Since none of the other syringes I had were the right size to deflate & reinflate the balloon, I yelled to the kids to get in the car and tried in vain to tape gauze over the hole to keep the mess to a minimum on the way home. (now that I've done a whole big post about all the different types of medical tape we've ever used, the only kind I had was one that is useless when it gets wet). I'm sure it was a memorable trip to the bus stop for all the kids' friends and their parents.
The best I could do was to pick her up with Cole's jacket wrapped around her with the sleeves tied around the front of her to hold her pants against the hole which was still oozing like crazy. I strapped everybody in and crossed my fingers that the tube would go back in when we got home.
Since we had such a lovely view of the hole (aka stoma, if you're being technical), I decided to take a picture in between attempts to get the tube in:
And yep, there were multiple attempts. I tried once and the tube just bent over like I was trying to jam it into a solid surface. Suddenly the hole looked very tiny and the tube looked huge. Fortunately, when I took it a little bit at a time, it slowly went in and by some miracle Raya didn't move while I was doing it. She was kind of fascinated with the whole process but then it started hurting her a little and she started yelling at me and grabbing at it. I told her she'd better hold still because it would hurt a lot more if we had to go to the hospital to do it!
After that little ordeal, she started asking for sour cream again so I put her in the high chair with about 4T of sour cream. That turned out to be a mistake. Evidently she needs to have her sour cream 1T at a time or else she gets too distracted and paints her face, arms, hair, the table, and somehow the back of the chair that her high chair is strapped to. She ate about 2T of it and aside from a few pieces of dry cereal, that was it for the day. Nowhere near where she was yesterday, but that wasn't too surprising. She seems to have a pattern of having a really low calorie intake day right after a really good day.
We shall see what tomorrow brings. At least I can {almost} count on her eating a few bites of sour cream (since there will be Mexican food at our Thanksgiving) and maybe nibbling on a roll, and possibly plowing through any unattended plates and/or cups. I will be putting on my germophobia blinders and crossing my fingers that she has a good day. :)


  1. Brandis! This is amazing. Thank you so much for sharing your family story. This is Laura Kindall (Brad's older sister). Our 6 month old son Henry (Diagnosed w/ Down Syndrome) just got a G Tube on Monday. He has has an NG tube off and on since he was born - and I agree with you that while it is great there is a way to feed these little angels it is gross and a pain in the butt. Thank you for your post about adhesives and how you don't panic when the G tube gets pulled out. I am still kinda freaking out about the whole thing, but hopefully I will figure it out and get this little boy to grow. Thank you so much for speaking so candidly, I share much of your pain and struggles as well as the funny stuff too. Best of luck to you and your family. I will be a frequent visitor of your blog and look forward to seeing Raya's progress.


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