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Saturday, June 13, 2009

Want to be "In The Know"?

Original Post as it appeared on Saturday, June 13, 2009:

I am working on a special educational/tutorial post with pictures today explaining everything I "tweeted" just now. Click on the "follow me on twitter" at the bottom of my left side bar and start reading from the bottom of the page and up for the whole story and today's update on how Megan is doing. (No, it won't be graphic or gross. I promise.)

Updated Post as of Saturday, June 20, 2009.

Here are the tweets that I posted on Saturday morning regarding Megan's unfolding drama on Friday night, just before she had her tunneled central line replaced with the "temporary style" central line. They are listed here in the order I "tweeted" them in.
  • Megan is out of surgery now. We are just waiting for her to wake up so we can go into the recovery room and see her.

  • Megan came out of her central line surgery like a trooper. She has a new line which we are using for fluids and antibiotics. The bad news?

  • Just as they came to take her to surgery, the failed yet still fragile and functional GJ tube bit the dust. We started getting ready to...

  • ...transfer her to the bed to go to surgery and found this brown liquid all over her bed. Guess what it was? Drumroll please....

  • Her stomach contents. The face of the gastric port on her GJ tube totally came off. You should have seen the look on the nurse's face...

  • I said, "Got a new G-tube we can put in until we can get the GJ replaced.?" She said, "I don't know what to get." I said, "Don't you have...

  • "...a catheter with a balloon we can throw in to plug her stomach from falling all over the bed? I can change it. Is that what's wrong?"

  • You should have seen the relief in her face when I said that. She said, "I'll be right back." and came in with an actual G-tube.

  • I said, "Yeah, that'll work. I took the GJ out - she put the new G in (with a little mess) and Megan was whisked off to surgery.

  • The really bad news? It happened on a Friday evening at 6:45pm. The GJ tube won't be put back in until Monday when Interventional radiology

  • is back "in the office." This means Megan will have to get her nutrition intravenously. Her food went into the J port which goes into

  • ...her intestines. But, we can still give her medications. They went into the G port, which is her stomach. And, that is what we put in.

  • Why did I tweet all that? I could have just put it in a short blog post? I am making a pictoral blog of what happened so you can understand.

  • It may take me most of the day to finish. Getting all the photos ready and everything.

Now that you have taken the crash course All About G-tubes and All About GJ-tubes, you are ready to fully understand what happened last Friday (June 12, 2009) night just as the transport lady showed up to take Megan to surgery. I went to pick her up to place her on the transport cot and felt - Tweet #5.

This is what I found: An extension with a Gastric port attached to it - not attached to the GJ-tube itself.

Remember, the GJ tube is supposed to look like this.

When I took the Gastric port off of the extension, the GJ tube looked like this.

Then, just for the fun of it - I decided to show you what a GJ tube looks like after it has been in Megan's belly for about 6 months.

See how the balloon is no longer symmetrical? And the color of the tube after it has been washed in gastric juices? The tube part of it wasn't going to last much longer either.

Just for kicks, this is how long her GJ-tube looks. The sizes vary depending on the age and size of the person wearing the tube. Megan's is 32 centimeters long.

I'm sorry. Some of these pictures are a little gross. But, that's the worst it gets.
Now, You are "in the know."
The pictures are a little dark - sorry. I took them inside, with my cell phone, and no flash. By the way - This is the actual tube we put in that night. And, this is a picture of Megan's belly.

And, as I said in the "All About GJ-tubes" post, we waited until Monday at 3pm for her appointment for her button to be replaced in flouroscopy. The pictures of the button with the extensions attached are of her new tube placed on Monday. We were able to administer her medications over the weekend, but she had to receive IV fluids until Monday afternoon to supplement her feedings and keep her hydrated. Luckily, she still had her "temporary-style" central line in place. I can only imagine how many peripheral IV's she would have gone through on that much fluid for three days.


Heidi Hutchins said...

wow! i am being faced with a decision to do a fundo + g-tube... saw that a jg tube might be better... I have to make this decision because she is 8yo and weighs 24 pounds, and she has for 4 years! HOW ON EARTH DOES ANYONE MAKE THIS DECISION???

Anonymous said...

so are you saying for you the button tube has more flaws then gj tube that hang out more,,,

Lori said...

This post is just a way to show some of the trials of using these tubes in general. I think the benefits far outweigh the hassles. The button tube actually is my preference because we had more problems with the gj tube that hangs out being pulled on more easily. I talk about that more in the All About GJ tubes post.

Gloria said...

Thank you soo much for this post. I have been looking for information on GJ tubes and all I find is medical, not very easy to understand. My daughter is 6 months and she is already on continuous feeds and is still refluxing very much. This sounds like it's what she needs :-)

Ldepina said...

Thank you for your courage to make your story and struggle known. Your family is a blessing for those needing some/all of your information. My little princess has had a few difficulties, and will need a g-j tube, which we're scheduling. I hope and pray that you, along with us, will finally receive answers we've been long awaiting about the conditions of our girls.

Yohe_family said...

I am considering a GJ tube now (for myself) and this has been extremely helpful to me.

Mcmadre said...

Thank you so much for this very informative post. My 4 month old is waiting on a heart transplant and had a G button, but just received his GJ button today. I'm so glad I found your post, it really helps to have some insight on it from someone who has dealt with it at home.

Allison said...

I found your blog while searching for info on a G-J tube for my son who has special needs and still is refluxing so much with just a G tube. This was so helpful... thank you so much for taking the time to write all of this out for other parents out there.