Friday, January 1, 2010

ARG..more seizures...and frickin' g- tube problems...

This is Faith's old button...Isn't that a pretty site?


Two days ago, I noticed some leaking around Faith's g-tube site. I tried flushing it and couldn't identify the leak. I knew it was somewhere in the tube itself and not the valve. So I made an appointment with the surgeon to get it changed. Now, Faith's is a Genie and if there is a leak in the tube then the whole thing must come out and it does not have a balloon. So, it means jerking that thing out! Well, I get up in the morning ready to go to Greenville, then Faith has another big seizure! This one lasted a total of about 5 minutes even after the Valium. So, she was drugged up and had to make the 1 + hour trip to the surgeon's. When I get there, the nurse (who I have had some not so nice run-ins with) informs me that they stopped making Faith's type of tube! UH, WHAT? EXCUSE ME? Obsolete, say the manufacturers! Which is crazy because it is so easy and convenient! So, nurse tells me that we either have to try to last as long as we can with her old one or change to a new style.



LET ME STOP HERE AND SAY JUST ONE THING... I DO NOT HANDLE CHANGE WELL!



So, I sit down and have a good cry and then call Hubby and text him some pics of the different ones we have to choose from. I grilled the nurse about different features and what parents usually choose. I was not a happy camper! I ended up choosing an AMT mini ONE Low Profile Button. It was the closest one to her original one.. but it has a cover on it...which we HATE... and it has this stupid little decompression tube that must be locked into the tube and then rotated. (Very inconvenient for night feedings!) Not to mention that the tube itself is smaller and thus the feeds go MUCH slower! NOT HAPPY AT ALL! But what could we do? Then this morning, I see some sort of leaking in the same spot as before the tube change. Don't know what this could be...Never seen it in 5 years.

So, it has once again, been chaos in the Hudson house! Now, I have a question for all of you out there. We have had it with our neurologist- treating her seizures- so we are exploring an epilepsy center at MUSC in Charleston. My question is have any of you had children treated at an epilepsy center and what were your experiences?

6 comments:

Carla said...

I am so sorry to hear about the g-tube. How fgrustrating for everyone. I have no experience with epilepsy but I know a mom who has extensive experience. Her name is Jill. On my blog her button is the "praying for Matthew" button. Jusdt click on it & it will take you directly to her:) She is a gem & I'm sure she could help you:)

therextras said...

Sending hugs and prayers. Barbara

Amy Genn said...

Sorry to hear about your frustrations!
WE LOVED OUR AMT MINI ONE BALLOON BUTTON!!!!!
You'll get used to it, I promise!

Eli originally had a Bard and I was so opposed to switching over....and man it's the best decision we ever made! :) Funny how things work out like that.

Anyway, he's got his honkin' huge GJ button now and it's leaking so we have to go get it replaced, at the hospital (either 2 1/2 or 1 1/2 hrs away, whichever we choose)
and it's no fun to watch....
and our big problem since he got it is granulation tissue!

We never had a problem with it for 4 years....so I TOTALLY UNDERSTAND
the frustrations!!! :)
Amy

Katy said...

First let me say that the story of Faith's birthday part was just wonderful. You know why that little girl is so fabulous--she was raised by good people!

I have to say that I never THOUGHT about feeding tubes. They told us we were getting a Mickey and that was it. Options? Never crossed my mind.

Beverly said...

so sorry this happened. it must be just awful. hope all is well and better now

Anonymous said...

I know I am late to the game here since this was posted 2 years ago but I agree with the above poster that the mini one is just as low profile as the bard genie which I just loved. We faced the same thing with the bard genie being discontinued. If you are having granulation tissue issues you may need a wider tube so there is no leaking. But the change has made our life easier. No need to go to the surgeon to change the button anymore. That was expensive and time consuming.