Friday, October 22, 2010

Get The G Outta Here!

Rosemary's 5th GJ tube popped out again today. I cannot, for the life of me, understand how it backed itself out...again. The balloons that are designed to keep these tubes in place are deflating, allowing the tube to slip out of her belly. Is anyone out there with a feeding tube kid having these GJ issues?

I was getting my hair cut today when I got the call from my daycare provider. I heard Rosie crying in the background, and Miss Susan trying to calm her down. She quickly explained what had happened and I then began to walk her through...fixing the problem. While she had her finger over Rosie's stoma, which was spewing yellow stomach bile and formula all over the two of them, I took her through a step by step process of cutting the 10 inch tube to be short enough to thread back into her belly so she could tape it down to keep it in place until I got there. This had to be done in order to keep the stoma open. Thank God I have the most patient, able and willing sitter. Not just anyone will, or could, watch a child with Rosemary's medical history.

Once I got Rose home, I deflated the tube the rest of the way, pushed it back down into her belly, re-inflated the balloon and now I'm waiting for my cousin, an ER Nurse at Children's, to get home with a replacement G tube to reinsert. I don't know why I never got a replacement. Even though she had a GJ tube, I should have had a G tube for these types of emergencies. Lesson learned.

I don't know if the cause of its malfunction is within the tube's balloon mechanism itself, Rosemary's activity level, or her displeasure of the thing that makes her attempt to yank it out that causes it to deflate. But she has now lost 2 tubes in the last 8 days. This kid has already gone through so much radiation during her hospitalizations, and having a GJ replaced means going into Fluoroscopy and being exposed to large amounts of radiation again. It's like a video x-ray. They have to take live x-rays of her belly while they are maneuvering the tubes and wires in order to get the correct placement. In Rosie's case, they have to spend a lot of time getting it past her duodenum because it twists and turns like crazy and they have a hard time looping it up and over that section of her intestines. The tube is about 8-10 inches long. They have to feed a series of many feet of wires into her gut first and then once it is in the correct place, they slip the GJ tube over the wire, down into her belly and through her intestines for placement. Once it has reached its destination, they inflate a balloon that keeps it in its "permanent" spot. All the while she is awake for this whole process. No sedation. Lovely. It's possible.

I just want Rosie to eat. Last week's GI visit went well, it rendered more ideas on what foods to try out. We are decreasing her feeds so that she gets hungry on her own. I seriously do not want her to have to rely on the tube to eat. She is attempting more and more foods. Todays favorite, Cheeze Its. She isn't gaining weight from food, so no matter what, we have to have a feeding tube option right now. Because the tube popped out so late in the afternoon on a Friday, Fluoroscopy could not get her in today. We will have to just pop a G tube in and hope that her belly tolerates the feeds this weekend. I'm actually excited to see if I can get her to eat more food! Hydration and nutrition are always concerns with cardiac kids, but hey, something's gotta give...I want that GJ outta here!

Here's to an interesting weekend. Cross your fingers folks. And no, I did not finish the haircut. Whatever. I like buns. :)

Now off to drop off my 12 year old to her first school dance. After all, I am still a Mother of three.


Naomi and Paul said...

I have a suggestion for the G-tube issue! Lilly had the same problem, that is when we changed to a AMT Mini One Button. This is a non-balloon and has worked wonders! If you need anything drop me a line @

Leighann said...

Hey! Someone who follows your blog joined mine today... when I was checking out her profile I saw your link. My son has HRHS... we were at CNMC for his first 2 months, home for 2 months and then there 6 more. He's been home for 12 months now!! My gosh, where does the time go. Point is, we speak the same language and must live in the same area???? Dr. J is our surgeon too. We should chat sometime.