g-tube

camily

Peace
appyday said:
She is adorable...we call our daughter peanut and she is 16...


Can I ask...obsorbtion problems with animals I know usually has an underlying problem...like the foals...and when they were so bad off and not obsorbing their total protein levels went dangerously low...so we did plasma transfusions and they picked right up...guess thats not something you can do? I mean why is she not obsorbing? Does she get it in and not obsorb it or is she not eatting well for you at all...its so hard with watching someone you love and being so helpless...Maybe the NG tube is the way to go...good luck.. :huggy:
Interesting Appy. I'm not sure if that is an option or not, but I'll look into it. Who knows why she isn't absorbing. They continue to do the testing and hopefully they will find out soon. They just can't wait any longer. They were hoping to find out so they wouldn't have to do the tube, but she is at the end of the cut off on waiting with no lasting effects. It is like looking for a needle in a haystack though. Just a process of elimination, and that is grueling. Thanks for the idea though! I welcome any help or advice.
 

mamissa3

New Member
What a cutie:) hope things go well for you and her. I dont know you all that well except for watching you post but you both are in my thoughts:)
 

camily

Peace
bohman said:
They are cute when they sleep, aren't they?

Good luck, medical issues can be really draining. I hope it all works out.
Yeah, here's one from Easter.
 

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BRITUSA

BRITUSA
camily said:
Yes, she has a kidney disease called Renal Tubular Acidosis. She takes Bicarb 3x's a day to keep her co2 level right to make all her other levels fall into place. She also has had malabsorbtion problems where her food just goes right through her. This started when she was 6 months old and started losing weight. It is a real struggle for her to simply maintain her weight. The doctor is afraid that if we don't do something now she may have life long problems due to lack of nutrients reaching her brain. If her body isn't growing, neither is her brain. Right now she is fine, but we are at the cut off for no lasting effects.

Has she ever been tested for Celiac disease?
 

camily

Peace
BRITUSA said:
Has she ever been tested for Celiac disease?
Yes she has. That was one of the first tests they did. Also have done Cystic Fibrosis, and Trichorhinophalengeal Syndrome to name a few.
 

Katt

Active Member
Camily..... I would definately take her up to Children's Hospital in DC if you've not done that already. My twins were born very prematurly and up until they turned 18, one of them was followed with doctors there for her medical issues. They do miracles up there all the time. My daughter had a G-tube for a year before she started eating by mouth. She had an NG-tube for a year before that! I totally understand your dilema, and my heart and prayers go out to you and Your Baby. :huggy:
 

camily

Peace
Katt said:
Camily..... I would definately take her up to Children's Hospital in DC if you've not done that already. My twins were born very prematurly and up until they turned 18, one of them was followed with doctors there for her medical issues. They do miracles up there all the time. My daughter had a G-tube for a year before she started eating by mouth. She had an NG-tube for a year before that! I totally understand your dilema, and my heart and prayers go out to you and Your Baby. :huggy:
Yes, I agree! She has been going to Children's since about 6 months old. Her nephrologist is the Chief of the department so I am very thankful of that. Actually, the only other place she goes is NIH so I know she is getting the best care she can. Thanks!
 

forever jewel

Green Eyed Lady
Camily- When I was an infant, they put a G-tube in me. According to my mother, I could not hold food down, and would always throw it up. Didn't eat any food until I was your little girl's age. I still have the scare from it...my friends jokingly call it my second belly button :razz: Your daughter and you are in my prayers. Good luck to your little girl :huggy:
 

Katt

Active Member
forever jewel said:
Camily- When I was an infant, they put a G-tube in me. According to my mother, I could not hold food down, and would always throw it up. Didn't eat any food until I was your little girl's age. I still have the scare from it...my friends jokingly call it my second belly button :razz: Your daughter and you are in my prayers. Good luck to your little girl :huggy:
:yeahthat: ... she's my daughter! :howdy: Hey, Jewel! :razz:
 

camily

Peace
forever jewel said:
Camily- When I was an infant, they put a G-tube in me. According to my mother, I could not hold food down, and would always throw it up. Didn't eat any food until I was your little girl's age. I still have the scare from it...my friends jokingly call it my second belly button :razz: Your daughter and you are in my prayers. Good luck to your little girl :huggy:
When did they take it out? Is the scar big?
 

forever jewel

Green Eyed Lady
camily said:
When did they take it out? Is the scar big?

They removed the tube when I started eating at 2 and 1/2. My first food was a kidney bean, which I can't stand now...but anyway, back to your question...

My scar is not very big at all. Literally looks like a second belly button, located about 2 inches to the left of my actually belly button. The only problem that I've experienced with it as I've grown is that occasionally the scar tissue immediately behind it tightens up and I have to stop whatever I was previously doing and allow the tissue to relax. That occurred usually when I had to do sit-ups or crunches in gym class. Guess as the diaphram muscle contracted, the scar tissue would tighten. I think the tightening up is all individual though. Probably dependent on how the scar heals. But other than that, it really isn't an issue.

I also have another scar that spans the majority of my upper abdomin from when I was an younger. Surgery to "twist" my stomach so I wouldn't throw up. I think that enabled me to eat....I think. Ask Katt, lol she would know!

So I think my biggest issue is appearance. Because I have these two scars on my stomach, I am a bit self-conscious and apprehensive to show my stomach. Most people feel the same way about scars in general, so no worries my dear. Hakuna Matata!!! :huggy:
 

camily

Peace
forever jewel said:
They removed the tube when I started eating at 2 and 1/2. My first food was a kidney bean, which I can't stand now...but anyway, back to your question...

My scar is not very big at all. Literally looks like a second belly button, located about 2 inches to the left of my actually belly button. The only problem that I've experienced with it as I've grown is that occasionally the scar tissue immediately behind it tightens up and I have to stop whatever I was previously doing and allow the tissue to relax. That occurred usually when I had to do sit-ups or crunches in gym class. Guess as the diaphram muscle contracted, the scar tissue would tighten. I think the tightening up is all individual though. Probably dependent on how the scar heals. But other than that, it really isn't an issue.

I also have another scar that spans the majority of my upper abdomin from when I was an younger. Surgery to "twist" my stomach so I wouldn't throw up. I think that enabled me to eat....I think. Ask Katt, lol she would know!

So I think my biggest issue is appearance. Because I have these two scars on my stomach, I am a bit self-conscious and apprehensive to show my stomach. Most people feel the same way about scars in general, so no worries my dear. Hakuna Matata!!! :huggy:
Thanks for the information! There is a baby at my church that had the same "twisting" done to her stomach. She is the baby that also has a feeding tube as well. Interesting. Thanks again!
 
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