Froggy came down with a stomach virus on Friday and hasn't eaten much. She's lost some weight, but finally started eating again today. This mama was nervous and almost cried when Froggy ate a piece of bacon today.
We met with the GI doc and here are the facts:
We have four appointments in the next two weeks. They'll run tests on Froggy's GI system to make sure everything runs smoothly and all organs are in the right place.
We'll meet with our GI doc again on the 16th to discuss the results of everything and most likely will go into the hospital for the g-tube at the end of February. Froggy will spend three days in the hospital and have to wear a big tube for about three months. After that, her tube will be replaced with a button.
I welcome any advice, help, words of wisdom regarding the g-tube. We are entering unchartered territory and it's scary.
Froggy at 53 months:
Weight: 31 pounds
Height: 3 feet 3 inches
BMI: 14.3 (20th percentile)
And a little Froggyism...
Tonight we were snuggling in bed discussing nicknames. Froggy asked mine, I said, "Lisi, Spucky, Froggymama, and my mean older sister used to call me Wienie."
I said, "You have nicknames too. Froggy, Addiecakes, Babybean, honeybuns, etc, etc." Froggy said, "No my nickname is Matches, call me Matches."
What? She is such a weirdo. I bought her a new little pet toy and she named him "fruit treat." What a goof.
13 comments:
I'm so glad to hear she's feeling better. Mama's HATE stomach bugs in their little ones!
And I love her weird-isms. They're fantastic! Something tells me our two would get along well. My demon likes to tell me I'm doing my monster exercise when I do yoga.....'because Shrek is an ogre, too.' (yoga/ogre, get the connection?)
Sending lots of positive mojo for the g-tube!
She's soooo adorable! Love hearing about froggy-isms!
So glad she's feeling better and eating again! Ratatosk
Great to hear she's eating again and that they're moving forward with the feeding tube. It seems like parents with kiddos with them say they are a blessing once they start gaining.
I know this must be such a stressful time for you all. I hate when CF gets complicated. I'll be praying that this process is as smooth as it can possibly be for you guys.
Hi! As you probably know - Cici has a g-tube, too. They went straight to the MicKey button. I'm not sure why they have to do the big tube at all - maybe you could ask. I've heard of this before too. The button is SO much easier, especially for an active little one! And, they're "cake" to use - if you ask me. Oh, and I've pulled hers out several times, and now, it's no big deal. I just pop it back in, and we're done! Anyway - you know where to find me if you need. The surgery kind of sucks though - Cici had a Nissen as well though, and it definitely takes several days to feel better!
The whole g-tube thing does not sound like fun, I'll be thinking about you!
omg! matches! that girl makes me laugh, i love that you post her froggyisms!!
glad she's feeling better and eating!
i'm sure you have lots of g-tube people to talk to but if you want, i can talk to some people at ucsf about it and try to get any questions you have answered. if you want to email me specific questions lisi, please do!
love you!
((hugs))
Scary, uncharted territory doesn't even scratch the surface! I was terrified and dead set against it. It took me a long time to come to a point of acceptance with it. I'm sure you've searche CF.com already, but I've posted our experience ,with the g-tube there many. many times.
Emily was only in the hospital overnight, but she, too, started with a long tube. I don't remember the reason exactly, but I think it may have had something to do with setting up scar tissue so the smaller one could sit more comfortablly and securly in place. The tinier the kid the greater the need for the long one. I also remember being told that the risk of infection of the site substantially decreased when you start with the long one.
Em was tiny when she got hers, so we just coiled the long one and tucked it under a onesie to keep it in place under her clothes. This won't work for Froggy, though, probably. Ask your nurse about getting Sta-net...it's like a gauzy, soft sretchy tube that is used to on burn victims among other things. It comes in various sizes and stretches enough to go around the mid-section. This will hold the long tube in place comfortable and she can be her normal active self.
The long tube is an inconvienience, but it will be out quickly. (I wasn't quite prepared for how they removed it before placing the MicKey button, though...YANK and out! Ouch!)
Hmm. There's so much more I could share, but I don't wnat to use up all this space. If you want, please put together a list of specific Q's and I'll gladly answer as best I can. E-mail it to tdraxler@yahoo.com.
I promise you, you will be glad you did this. It's terribly hard. I know. But your Froggy-girl is a toughie like her mama. She'll handle this just fine, and be better, stronger for it.
Just a really quick Em-ism that you may have heard me say already...One of Em's daycare buddies was bugging her about her tube. She told him a few times, "It's just my tube. I get food in it at night." Finally, after he tried to touch it she turned on him and said, "Don' ttouch it! It's very dangerous! If you touch it it will squirt poo on you!" That settled it. I'm willing to bet he left her alone.
Oh! And, we had the long tube for only 6 weeks. Ask about that. I'd be curious to know the rationale for the longer time.
And, Emily at 51 months:
weight: 36 lbs 10 oz (62nd %ile)
height: 3 feet 4.5 inches (65%ile)
BMI: 15.7 (63rd %ile)
prior to the tube (at 18 months) she was FTT and below the 15th percentile in all areas.
It took a long time to get here, but it kinda speaks for itself.
lol @ tdraxler "It will squirt poo on you". That is funny.
We are all keeping you in our hearts during this time!
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