Wednesday, September 9, 2015

Good Bye, Gastrostomy Tube

 Last month we had a long anticipated doctor visit with the GI specialist and co-treatment with our dietitian. I was looking forward to this appointment since March because I knew they would decide if now is a good time to remove Cora's gtube or not. The general rule is, you have to not use the gtube for at least 6 months. Here are Cora's stats:
  • Has not used the gtube for nutrition since December
  • Had a set back in the spring; she was really sick, starting to lose weight, and classified as failure to thrive. We learned she has four major food allergies and once we addressed those she started putting weight back on again.
  • During the spring set back we used the gtube for water. We did 8 oz bolus' once a day for two weeks.
  • She's still in 75-90% for height and weight. She put back on the weight she'd lost in the spring and is now caught up nicely!
We got the green light from both the dietitian and Dr. Z to remove the gtube!!! Here are the pictures, it wasn't a big deal at all and no procedure. They just pulled it out, put a dab of glue on the stoma and put two steri strips across it. Easy.

Here's the happy girl after the appointment!
Here's how the scar looks today, it kind of looks like a second belly button. The scars above and below it are from the stitches she had for 2 months that was holding the gtube in place while the stoma formed, and the inch long scar to the left of it was the incision scar from the surgery.
However, I was not prepared to deal with all of the emotions that came with removing the gtube. Anxious, happy, thrilled, nervous? Sure! Oddly enough, it felt like Cora was losing a limb. It felt like we were leaving a part of her behind when we left the hospital and she wouldn't be complete again. I felt sad because this gtube was literally her lifesaver! It saved her life and has been a part of her for 1 year and 3 months. And just like that, it's gone. I bawled. I almost felt the need to have a funeral, some sort of proper good bye and showing my respect. I couldn't believe how attached I had become to this little medical device and here I was sitting in the car in the hospital parking garage, just bawling my eyes out because I had to mourn this loss. I was so incredibly happy, it IS a good thing to have it removed because Cora doesn't need it because she's thriving so well on her own. But I was just so sad to say good bye, I needed more time to cope with this separation. And I shocked myself, I had no idea that I would feel this way until it hit me like a brick wall. The whole processing of it was just bizarre.

Needless to say, Cora is doing great without it. This is proof and this is how she eats every meal, like she's completely ravenous!
When we got home from the appointment I took Cora in to show Lance the good news. I said, "Cora, show Daddy your button." She lifted her shirt to show him and looked up with the most perplexed look on her face! She kept looking at her belly and up at us with inquisitive eyes as if asking us, "Where did it go?!" She realized it was gone and she still lifts up her shirt and looks at me wondering where it went.

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