Skip to main content

Things I hope the neighbors don't overhear while the windows are open...

"Raya get over here so I can plug you in!"
"Mommy, I want unplugged!"
"I don't want to be plugged! I don't LIKE formula!"

"I can't unplug you until you ask with nice manners and a happy face."
"I can't squeeze you until you let me plug you in."
"Eew, gross! It smells like Raya's stomach in here!"

"What was that sound?" Raya: "*giggle giggle* That was just my stomach."

"What's that stuff coming out of Raya?" (referring to syringe connected to G tube) "Oh, that's just chocolate, snot, bathwater, marshmallows, and a little bit of formula."

"Swallow that bite of potato or you are NOT getting anymore butter!"
"Hold still and let me put this back in your stomach or I'm going to have to sit on you. You don't want Mommy to have to sit on you, do you?"

"I don't WANT to go to THAT doctor, I want to go see Dr. S!"
"Raya, it's time to feed your tummy." followed by "NO! My tummy doesn't WANT to be feed!"
"Don't open my cap! I want to open my cap mySELF!"

"Your stomach is leaking, get off the carpet!"
"Put down that goldfish cracker right now and eat your Smarties."
"No, sweetheart, I'm sorry but you can't have a bite of Mommy's sandwich. It would make your tummy sick. Do you want an ice cube instead?"

"Raya burped! Good job, Raya!!" (repeated excitedly by all members of the family, whilst patting her on the back)

"Calm down and relax. If you puke, you're going to be in trouble."
"You'd better not puke!"
"I don't WANT formula! Feed my tummy SLOOOOOWWW, please."

"Mommy, there's puke in my mouth. It's okay, I swallowed it."
"Mommy, I spit up."
"Mommy, Raya spit up." (she's 3, by the way.)

"Guys, throwing wet diapers at each other and calling them stink bombs is NOT acceptable behavior."

"Okay everybody, we're going to have a race to see who can get their jammies on before Raya's pump starts beeping. Ready, set, GO!"

"Stop pulling on that, you're going to tip over your IV pole!"
"That IV pole is NOT a toy!"
"Raya, stop drinking out of your extension tube!"

"Mommy, Raya's beeping!"
"Look, Mommy, I making that stuff come out of my tummy!" (as she flexes her abs while I'm venting her stomach)
"Raya, get your finger out of your stomach."

"No, you may NOT share your crackers with your sister!"
"Mmmm. That was yummy dinner ice! Thank you for the dinner ice, Mommy."
"Raya, how many ice cubes do you want for dinner?"
"Can I have my ices wet please?"

I know there are lots more that I'm forgetting at the moment but you get the point.

The kids have some interesting words in their vocabularies too. Yesterday, Cole's homework was to draw a double bubble map about the respiratory and digestive systems. (he's 7 and in 2nd grade) He did it by himself from memory and did a GREAT job. He came to show it to me and was trying to remember some other digestive system words. After he described them to me and told me that one was part of the small intestine and one was part of the large intestine, I figured out that he was trying to think of jejunum and colon. JEJUNUM and COLON. What 7 year old knows THOSE words?? He makes his momma proud. :)

And last but not least... I was debating adding this story but what the heck, might as well. So yesterday afternoon, I was putting together the emergency G tube kit for the health office at Raya's school in case her tube ever comes out at school. One very important item in an emergency kit is water soluble lubricant to put on the stoma and the tube so that it will go back in without hurting as much. We don't have any surgi-lube laying around so the cheaper alternative is KY. I was filling a syringe with it and realized that the tube was getting a little low. For a second, I thought to myself, Oh, we're low on KY. Maybe Santa should put some in Raya's stocking...oh wait, that's probably not an appropriate gift for a 3 year old.

Comments

  1. LOL!!!! I thought ours were bad...these are the winners!

    ReplyDelete
  2. LOL - yup. My DH had to ask the pharmacist where the k-y was. He was more embarrassed he couldn't find it than he was of what he needed. Until the kid asked what variety he wanted, and DH said "I assume plain -- it's for my 3 Year Old." He then turned red and stammered "My 3 year old's FEEDING TUBE." Thankfully they know us VERY well at CVS so they didn't think anything of it. And yes, we plug our tubey kids in (we have 2 of them)at night...it's like the Matrix.

    ReplyDelete
  3. HAHA! I love it! My daughter is 3 and has Hirschsprung's Disease, so we have to do a lot of rectal irrigations. I HATE going to the store to buy lube and rubber gloves at the same time...there's just no explaining that to the cashier!! My daughter also has a mic-key button g-tube, so I recognized a bunch of these! I can imagine how these things sound to other people, but it's our normal and we embrace it and make the best of it, and you can't ask for more than that! :)

    ReplyDelete
  4. Santa should put some extra tubie supplies in Raya's stocking so you don't run out!!! I had a g-tube from 2 weeks before my 1st birthday until I was 3.5 or 4 years old. The scar looks like a second belly button now. I can send you an email with my page of medical equipment that I had when I was a baby if you want. I think Raya would love the pics of me and my feeding tube. Only tubie parents know what those sayings mean as well as other tubie families :D

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …