Trial By Fire This Morning

[dixienormous]

PF got a new g-tube yesterday. It's essentially the place-holder while her mic-key button is on order. She had to go under anesthesia and all that jazz.

So the new tube is held in place with an inflated balloon. Just like the button will be. How fun was it this morning when I stood her to fasten her pants and her new tube was laying on changing table? It wasn't pleasant to put that sucker back in, but at least we were able to. I just hope it's not a defective balloon. 

We had to do it ourselves because the stoma that she has (it's basically like a piercing hole) is just like if you have/had your tongue pierced. Once the tubing is out, it closes VERY quickly. 

I sent a note to her school (in a children's hospital) and they assured me that if it came out during school they would re-insert it. I left a note for the nanny to be VERY careful of the tube for the time being and to call me if there was any issue.

Seriously, trying to reinsert a tube into your kid's stomach is *not* the way to start the morning. At least she kissed me when I said good bye to her. She didn't talk to me at all after I put the tube back in.

[neonpink]

Ouch that sounds like a way to start the day. I hope PF is ok today and no more issues arise.

[Deleted]

Oh man dixie, sounds like a difficult start to the day.

[dixienormous]

I will say that this was good practice. At *some* point I'd had to change out her button. I just wasn't ready to do it without a training in the doc's office.

[Muddled]

I hope this was an anomaly.

How's the weight gain coming?

[dixienormous]

Sept 19, 2013 9:54:50 GMT -5 Muddled said:

I hope this was an anomaly.

How's the weight gain coming?

The on-call GI I spoke with said it was a rare thing. I guess we have shitty luck.

Weight gain is good. She's firmly on the weight chart and we're adjusting her tube feeds to try to encourage more oral feeding. Which is a process in itself, but we're on the right track. She ate a chicken nugget and a half the other night for me!

As of yesterday she was 27lbs. Which gives us an 8lb gain since March.

[captainmel]

That seems like some great weight gain process! The g tube thing sucks though. I hope it does't happen again.

[cuddlyevil]

That's great weight gain!

I hope there are no more problems with the g tube.

[motzie]

That sucks about the tube, but is awesome about the weight gain.

[captainmel]

What are PF's favorite foods to eat?

[Muddled]

Sept 19, 2013 12:16:48 GMT -5 captainmel said:

What are PF's favorite foods to eat?

5 lb cookies

[dixienormous]

Sept 19, 2013 12:42:49 GMT -5 Muddled said:

Sept 19, 2013 12:16:48 GMT -5 captainmel said:

What are PF's favorite foods to eat?

5 lb cookies

Pretty much, Muddled.


captainmel - she doesn't seem to have favorites. The fight comes from it being very hard for her to chew because of her weak jaw. Also, she is unable to feed herself (lack of coordination, fine motor skills, and because of the jaw weakness and brain signal issues she doesn't know what to do in order to bite down). It's a very slow and frustrating process to teach her all of these things

[captainmel]

I'm sure she will start to develop favorites dixienormous. I'm sorry it is slow going though.

[partiallysunny]

Poor thing my heart aches for her (and you). How difficult.

Yay on the weight gain!

[wrathofkuus]

Poor baby (I'm not only referring to her).

[tiramisu]

dixienormous, I'm sorry you had to reall with all that today. Her weight gain is awesome though!

[starrieskies]

Dixie, I just have to say that I think you are amazing and OF is so lucky to have you.

[dixienormous]

You all have been an amazing support system. She and I couldn't have better cheer leaders.


And good news!! In her feedin equipment shipment today there will be two shiny new BUTTONS!!!!!!!!!!!!!!!!!! NO MORE TUBING!!!!!!!!!