Sunday, April 19, 2009

More Disneyland and g-tube problems.

Some more fun pics. me and Carter on Dumbo.

The Finding Nemo submarines.



Riding the big pirate ship.



All of us with Mickey, the king of Disneyland.



Us with Donald, do you think Jax can put his head down for any pics?






Me and Jax on Buzz lightyear ride.



The Mickey statue at our hotel. Do you think I could buy this for my yard?


We are still having g-tube problems. We are on our fourth button since Feb. My insurance only pays for four a year, so I'm expecting a nice bill from the hospital in San Diego that gave us two buttons. I don't know what the problem is. We may need a button that doesn't have a balloon in it. I do notice that when he hasn't pooped in a few days and his tummy gets big, that his button leaks a lot more. But thats another problem we've had since the nissen redo. No bowel movement on his own without a supository. He's always had "poop" problems, but not like this. I'm taking him in tomorrow for maintenance stuff, so we'll talk about it. Any idea's about the button would be greatly appreciated. I'm usually the one giving advice, since I worked at the hospital before I had Jax, but even I'm out of ideas. "Help"

16 comments:

Trina said...

Hey girlie.....

Sorry if you've answered this already but my mind is fuzzy :0)

What kinda button is Jaxson using? Is it a Mic-key? What size? Is it leaking out the 2 way valve or around the button or both? Is the balloon defective or is it falling out? How much saline are you putting in the balloon? They really need around 5 to 7cc's depending on the kiddo....As far as the pooooey thing we struggle with that as well.....Always have
I have something we use and its worked wonders with Jophie....We've done this for years now..It was passed down to us by another mom who adopted twins similar to Jophie...Her twins gastro doc told her this and she passed it along to all of us moms on our special needs group..Many of our kiddos have benefitted from this....I'll be back and type it all up for you. Right now I really need to hit the sack...Im exhausted! Talk soon!

Hugs,
Trina and Jophie

Alyson said...

Jaxson loves looking at the beautiful sky :0)

I hope his buttons stop leaking.....poor little man....

If you don't mind me asking, how much is a button???

The VW's said...

Great pictures! Gavin rarely looks down or at the camera either! Especially when he is being held...oh well!

I wish that I had advice on the button and poop issue. We have been very blessed that Gavin has not had problems with either of these issues. Hope you get some answers today at the doctor!

Kim Rees said...

Sorry you had so much trouble with the g-tube. I hope we don't have that many issues when our Liliana gets her's in June. I love the pictures of Disney! I'm sooo glad you guys still had a good time despite Jax's issues.

Michelle said...

Sorry about all the issues with the 'G' tube. Hopefully you'll get it all figured out...sorry I don't have any answers for you.
As far as Preslie's O2 dropping at night...this is all so new to me. could she just have started getting sleep apnea, or is that something that starts when she is born. When she was younger in and in the hospital for that month, she never had problems like this. HOpefully we'll get some answers too! :) Also, if she does have bad sleep apnea, what do we do about it?? Sorry for all the questions, I like to be prepared for everything, a blessing and a curse! Love the photos too! :)

Michelle said...

Thanks for the info. I wrote that doctors name down and will discuss the possibility of apnea. Yeah, her cardiologist said that it could take upto 8 weeks to get her off the O2 at night because of how long it takes our sweet babies to get over these yucky things. I just hate that 'not knowing' part, ya know?! And we have our Disneyland trip booked for May, so I am trying to figure out how to travel with all the O2 stuff in our limited space. I have cylinders for when we travel and the the O2 machine for at home, which we'll probably have to take both...a pain because we don't have that much room in the car, so I am trying to figure all this out! :) I need to get creative!

Stephanie said...

Oh Heck yeah! You're talking to the g tube queen here.. ok, maybe an exageration. But we have had soo many issues with V's as well. I don't know if Jax is on any potassium meds but I have been told that they can erode the balloons. V takes a small amount of zantac each day even though he's had a Nissen due to stomach acid wearing down the silicone. As far as leaking, he's been a leaker since he had a bad case of cellulitis last year because the darn stoma just would not heal. The GI doc did put in a larger french size a few months ago because his stoma tract had enlarged so that helped make a better seal, and oh my GOD we finally got the 1.0 and it has worked wonders. He's now in an 18fr 1.0. That and the dreaded silver nitrate has really helped him. Finally in a year and a half he's not soaking his clothes every day. If he needs a button without a balloon look at the AMT MINI ONE Capsule non balloon button. This is the one our peds surgeon said we would go to if we needed. It's non balloon (obvioulsy) and instead of using an obturator to place it, which can be kind of a drawback, this one is placed like a mic-key. but instead of filling a balloon with water once it's in the stoma you pull a little thread stitch out of the center port and a gel capsule splits open in the tummy allowing the silicome "mushroom" to open and the capsule dissolves in the stomach. It's pretty cool really and the AMT website shows it in a video. It's durable but soft and only needs changing once a year. It's also compatible with mic-key feedsets so if you have any you don't need to change your whole stock. V's surgeon swears by it for kids who need a non balloon button. Do I sound like a commercial.. lol? We've just had so many issues we've done alot of research and gotten alot of doctors advise. My V is on medicaid and they wouldn't cover it but the surgeon said if he really needed it that AMT has agreed to comp one to their office for other kids in that situation. Jax's GI should be able to contact a rep. I'm told that it is $30 over the medicaid coverage limit!! Good luck, email me if you need any other info.

Michelle said...

Hey-hey, Preslie is currently covered by Medicaid disability, so I am not sure if they'll cover anything. I'll have to check, cause her O2 concentrator is HUGE. We have our Tahoe and currently looking for a luggage carrier for the top (probably what you had to do), but there is 6 of us going adn 7 coming back, so it will be TIGHT, but we are so determined to make it work. Maybe I'll call Medicaid to see if they'll cover her...heck they should since they DENIED her twice for the Synergis shot!:)

Anonymous said...

First, write a complaint letter to Kimberly Clark. Our GI is trying to get as many people as he can to do this. They changed the make-up of the buttons and tubes about a year ago, and they have gone to crap (Sorry - but they have). They will either phone you and send replacements or send a complaint via e-mail. Save the button, if you can to send back to them.

The other thing is that Christopher has a tube for the exact reason you are talking about. While we still have leakage issues, it is a little easier with the tummy getting distended with a tube. Christopher is just now pooping without a suppository. Let me know if you need any Miralax. We have about a case of it! LOL! I'll mail it to you. I think a lot of it has to do with the hypotonia. We have been using glycerin instead of suppositories. IT seems just the stimulation helps to make them go.

Hugs!

Steph and Christopher in IL

LisaL said...

Can't help with the gtube issue, but we use Miralax at our house. My daughter stops right up as soon as we stop giving it to her. It really helps her go.

Melissa said...

I'm so glad that your back safe & sound. I'm sorry though that you had problems w/the tube..OH NO!!! Damn Ins Companies! Isn't there a way for them to just cover the damn cost...I mean, the poor Kiddo didn't even have it on for God knows how long!! I'd appeal;)

LOVE THE PIX..AWESOME!Missed ya!

My Three Sons said...

WEll Carson's GI talked about doing the nissen and placing a G-tube in at the same time. Your getting me very nervous. It seems like everyone's blogs that have the mic-key are always having problems. ARe there and good benefits?

I love the Disney pics. I haven't been to California since probably 1992. I see a lot have changed.

Maureen said...
This comment has been removed by the author.
Maureen said...

wow it looks like you guys had such a good time, but I am sorry you had such a hard time with the g-tube. I heard those are pesky. Hey, if you want to come to CT at the end of May for Penny's birthday party let me know :) I would offer to put you up but I live in a small condo :( Melissa and Dillon will be there. And keep up the good work momma! When Jax does giggle it will be such a sweet victory. I don't take Penny's for granted at all.

ITPrincess said...

Hi...my daughter, Franki, has already had 3 Mickee's. She's on her 4th. The balloons keep breaking. She also has Trisomy 21, heart problems, pulmonary hypertension, imperforated anus and a slew of other stuff. I'm going to check into that other button as suggested. Keep us posted!

Mr. Ed said...

insten of buying tubes post his size and you may get donations i currently have 5 sizes that my kids (both g- tube fed) don't use any more as well as some of thier freinds --if ballon keeps poping -- no help here but if he is a puller we have used abdominal binder(cut down to size)