How long has your kiddo been a tuber? (Or you!) Ava got her tubies 10/06, so a little over 3 years. She went to a GJ 8/07.
Do you mix formula or use RTF? What kind? Elecare...I wish it were RTF!
How do you mix it? Container? I am in love with these Rubbermaid shakers...love them! http://www.rubbermaid.com/Category/P...od_ID=RP091201 They're 20 oz, and they hold exactly 12 hrs worth of formula. The lid is tight and I can shake the holy heck out of them. I'm a total weirdo...I sort of layer the formula because I feel like it mixes more easily. I add a little water, the amount of power, her Miralax, and then more water. Shake it like a Polaroid picture, then add enough water to make it the full 20 oz, shake again.
Button or long tube? Button! Mic-Key GJ, but she had PEG first, then a G button.
Any tips/tricks to share? LOL, I would like to thank you ladies for helping me realized that cold water is NOT the best for mixing formula. Clean extensions with denture tabs (they're antibacterial!). Always carry a spare button or at least a Foley cath. For little kids wearing back packs...don't fill them all the way up. It's too heavy! And on and on and on.
Continuous, bolus, or other feeding schedule? Continuous...23 hrs
What kind of tube? Mic-Key GJ...sorry, this is redundant...I was talking to Ava, and my aunt on the phone, while typing.
How was the tube placed? Endoscopically
Does your tuber eat orally at all? She loves to try!!! Hot dogs are her fave, but everything seems to hurt her belly.
What do you see in the future for your tuber? I don't see us being tubeless, unfortunately. But, tubing really doesn't slow Ava down in the least, so I'm not all that worried about.
How long has your kiddo been a tuber? (Or you!) since birth on and off but full time since 5 months old, with a 2 week break at 10months
Do you mix formula or use RTF? What kind? elecare
How do you mix it? Container? screw cap container with sterile water
Button or long tube? nutraport G for drain. broviak J for feeds
Any tips/tricks to share? use all meds in tablet for can get 60 mls of meds into 4 mls its great .
Continuous, bolus, or other feeding schedule? Continuous.
What kind of tube? nutraport G for drain. broviak J for feeds
How was the tube placed? surgial open procedure for both
Does your tuber eat orally at all? will pretend to drink water and chock if i pul the typper up a bit to make her try.
What do you see in the future for your tuber? a long awesome future with the same opurtunity as every one else, Whats a few tubes and syndromes when you have over come so much already, We say bring it on
How long has your kiddo been a tuber? (Or you!) umm well, i had an ng tube for a while in 2003, and then again in 2004, but the g tube has been there almost 2 years... central line has been there for about 9 months
Do you mix formula or use RTF? What kind? mix elecare
How do you mix it? Container? mix it with smart water (for the electrolytes)... we mix it in the mixer that came with the elecare
Button or long tube? long tube when it was first placed, button now.
Any tips/tricks to share? two words... butt paste
Continuous, bolus, or other feeding schedule? continuous but not all day and not at all durring the night
What kind of tube? right now it's a g tube, and the central line is a bard power port
How was the tube placed? the g tube was a PEG placement, port was surgical placement
Does your tuber eat orally at all? yup
What do you see in the future for your tuber? well i'm getting a GJ tube very soon so hopefully i see less coughing up of elecare =D
How long has your kiddo been a tuber? (Or you!) 9 months next week!
Do you mix formula or use RTF? What kind? Stink nasty Elecare! It would be a dream come true if it suddenly became RTF. Santa? Please? I've been plenty nice...
Any tips/tricks to share? Calmospetine cream is amazing, Triac makes a cheaper super mini and it holds up well.
Continuous, bolus, or other feeding schedule? Bolus and continuous
How was the tube placed? Laparoscopically
Does your tuber eat orally at all? Does sucking on a candy cane count? Basically no. But he does like a goldfish cracker here and there. Or a single french fry.
What do you see in the future for your tuber? Tubies for the foreseeable future. We have some big testing next week at UCLA so we'll see if that helps anything...
__________________ Tru, Mommy to Dayton, IVF#2 Miracle
DX: Gastric Arrhythmia from Nerve Abnormality 3/16/09 - Lap Nissen Fundoplication,
Pyloromyotomy, Mic Key Placement Vital Jr boluses every 2 hours during the day 30mg prevacid daily, 17g Miralax daily
100% Vital Jr. fed, but tasting food! I 'm in LOVE with his tubies, and grateful
for his fundo...even if it doesn't always work!
His quality of life is so much better!!
Friendship is born at that moment when one person says to another,
"What? You too? I thought I was the only one." -- CS Lewis
How long has your kiddo been a tuber? (Or you!) Mason has been on a G-tube since Feb 15, 2009! It has been a BIG relief to have it, it saved his life!
Do you mix formula or use RTF? What kind? Were are on ready made, straight from the can aweful smelling, never going to like Vanilla again, Peptamin Jr.
How do you mix it? Container? [COLOR="rgb(255, 0, 255)"]Don't need to mix anymore! Thank goodness! When we did we used a Protein Powder Shaker, it has a wire whisk ball and was amazing for powder! [/color] http://www.jayrobb.com/cat_ProteinShakerBottle.asp
Button or long tube? [COLOR="rgb(255, 0, 255)"]Mic-key button[/color]
Any tips/tricks to share? [COLOR="rgb(255, 0, 255)"]We pin Mason's tube to him with Coban tape, I can't tell you how many times it has saved Mason from pulling his tube out! I agree with Calmospetine. We use his pump as his night light...LOL[/color]
Continuous, bolus, or other feeding schedule? Started out Bolus, gone to Continuous 20hrs and we are SO happy we did!
How was the tube placed? Laparoscopically
Does your tuber eat orally at all? Sometimes he does, depends on the day and his health!
What do you see in the future for your tuber? [COLOR="rgb(255, 0, 255)"]We don't see anything, the doctors don't understand what is wrong with him. So we are taking it day by day, week by week. I never thought that Continuous was going to be in our future and it is. I never thought we would even talk about a J-tube, but we have. I think that if we make time goals, we could set ourselves up for disappointment. If we have no expectations, we won't be disappointed and we can be excited when good things happen! Keeping any negative thoughts far away from our lives. If you think negative, you will feel negative! If you feel hope, when good things happen you will be able to rejoice in it![/color]
__________________
Dana ~Mom of three boys!
Joshua ~10-22-2005~ Healthy, Energetic, Asthma
Mason ~03-15-2008~ Has extremely Severe GERD, Aspirates w/ liquids, Chronic Pain from? Left side slowness, G-tube fed since 02-2009 on Peptamin JR, and Losac 3.5mg per kilo
Carter ~07-28-2009~ Has Severe Reflux, Sandifer's Syndrome, bottle fed and Losac 3.5mg per kilo
How long has your kiddo been a tuber? (Or you!) She had a tube in NICU, but came home without one. She has been permanently tubed since 12/17/08 (NJ), switched to a g on 2/3/09, and to a gj on 10/28/09.
Do you mix formula or use RTF? What kind? Stinky elecare. .
How do you mix it? Container? I mix it in this hard plastic coleman bottle my sister gave me. We make 12 oz at a time
Button or long tube? button
Any tips/tricks to share? We use kaltostat dressing instead of gauze, which has been a lifesaver in terms of battling infections.
Continuous, bolus, or other feeding schedule? 41 ml/hr, 24h
What kind of tube? mic-key gj
How was the tube placed? Original g was place endoscopically, but it failed due to site breakdown. This one was placed open, and she has a 2-3 inch scar from it.
Does your tuber eat orally at all? Nope, not allowed. Probably won't be doing any more attempts until summer.
What do you see in the future for your tuber? She needs to gain weight. If she hasn't gained by mid-december, then they want to put her on tpn to get her weight up. She is about 3.5 lbs below the 5th percentile curve on the DS chart right now. In addition, she has some heart stuff that we need to deal with-- large persistent pericardial effusion that they are debating draining.
__________________
Wendy, mom to a half dozen including Nora:
2/24/07 Down syndrome, GERD, severe dysmotility, intestinal malrotation, RAD, chronic aspiration, chronic lung disease, combined immune deficiency; NPO; taking Prilosec, Axid, carafate, Reglan, Robinul, Singulair, Atrovent, QVAR, albuterol, flonase; nissen fundo 2/3/09; G-tube 2/3/09, 2/8/09, and 2/17/09, GJ tube 10/28/09, port 4/27/10, broviac cvl 5/18/10, LADD's procedure 6/7/10
Sorry to railroad this, but Wendy, I had no idea Nora was still doing that bad. I hope she gets on a little bit of a better track before you have to pull out the TPN card.
, Wendy...I hope she gains a little and can avoid the TPN, but really, short term, I don't see it as a bad thing if it can help ramp up her fat stores and energy level a bit, especially during such a nasty flu season, kwim? If that's what it takes temporarily, may it build her up! I loved seeing the difference it made for Miki in terms of weight gain and general health, but the side effects and risks are just what make me nervous. s, mama!
The heart stuff sounds scary! What would the draining entail??? The cardiac stuff is still a whole new world for me.
Woohooooo! Definitely not going anywhere now, LOL!
http://www.caringbridge.org/visit/avaknops 
Ava + Miki = BFFL 
I'm a total weirdo...I sort of layer the formula because I feel like it mixes more easily. I add a little water, the amount of power, her Miralax, and then more water. Shake it like a Polaroid picture, then add enough water to make it the full 20 oz, shake again. 
Clean extensions with denture tabs (they're antibacterial!). Always carry a spare button or at least a Foley cath. For little kids wearing back packs...don't fill them all the way up. It's too heavy! And on and on and on. 
, Wendy...I hope she gains a little and can avoid the TPN, but really, short term, I don't see it as a bad thing if it can help ramp up her fat stores and energy level a bit, especially during such a nasty flu season, kwim? If that's what it takes temporarily, may it build her up! I loved seeing the difference it made for Miki in terms of weight gain and general health, but the side effects and risks are just what make me nervous. 
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