Tuesday, October 12, 2010

G-tube


Joyli had an appointment with her tummy Dr. yesterday. He said her weight has "flat lined." He also said that if she doesn't gain enough weight in the next 3 weeks he is going to put a G-tube in. A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach.

He gave her a stronger form of medication to try to get rid of the C-diff. He want's me to give her more solid food. However, the CF Dr. wants me to give her more formula and only a few teaspoons of solid food a day. She says that formula has more calories and nutrition. The tummy Dr. also wants me to give her ice cream. I thought you weren't supposed to give any baby any dairy before a year old. She's on Alimentum because any time I give her a formula that has any dairy in it she vomits for days. So giving her ice cream makes me nervous for several reasons.

The GI Dr told me that if we don't get Joyli's weight up it could have long term effects on her respiratory system. He also told me that 30 - 40% of CF patients have G-tubes. He says it doesn't greatly limit their activities and they can even go swimming and play soccer with it in. Having a tube and tiny balloon go into my baby's stomach still sounds a little scary to me. I'm going to do everything I can between now and the next 3 weeks to get her weight up.

3 comments:

Kids and Canning Jars said...

Yikes! I just read your other post late last night. So you were up later that I. I feel so bad for sweet little Joyli. Your doing all you can. Who know why God our Heavenly Father gives us such crappy trails. I mean that in the nicest way.

Melissa

Marie said...

Kael had an NJ tube (goes down the nose into the lower intestine because the relux is to bad to have it in the tummy) from 4 months to about 8 months. Then he had an NG tube(down the nose to the tummy) for a month or two. Lastly, we went to th G-tube. I know this is going to sound insane- It was SUCH a relief! It was the easiest form of tube feeding we did and it ended all the concern, worry and struggles with feeding. I loaded up the bag, set the machine, turned it on and away we went! You ca do bolus feedings or continuous feedings depending on what the doc wants. I actually felt extremely empowered as a mom. And Kael GREEEEEEEWWW!!! He got so big, chubby and healthy! It is never the place a parent wants to go, but when a kid just isn't getting nutrition, it's a blessing. Formula is mor calorie packed than solids. It's har to get Kael all his calories now and he still has to drink 2 cans of PediaSure a day to gain weight. Do you concentrate her formula to 24 or even 27 calories per oz? We had to do that wit Drew... If they do a G-tube, please, please PLEASE call me! I will get a sitter and come over for a day or two and teach you all the little tricks, etc I learned doing it a year with Kael. I love you guy and I wish you the best! PRaying for you!

Kathryn Packer Roberts said...

Eek. I didn't read the post, but hope everything is okay. Wanted to let you know that you are the winner of the bug caricature and I need your email address. Or you can send me your mailing address and attach the picture you want them to use for the caricature to my email, kathrynroberts@hotmail.com and I will forward it to Neal. Thanks for commenting again! I had a ton of hits but there was only one or two other people to participate.

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