UPDATE ~ P-Flap revision

[AndVeeGeeMakes3]

So, VeeGee's p-flap revision is scheduled for Thursday morning. I woke up this morning having nightmares about her dying on the operating table. I rarely have such worries about her surgeries, but I think because last year's p-flap was so complicated, I'm just sensitive this time. Also, we know that she'll lose some speech capacity because of this. We have no way of knowing how much, but there will be a loss, which makes me sad. BUT, I'd definitely rather her be breathing than speaking!

And, we're making no headway on the GI issues. I knew there would come a time when my love affair with all of her docs would end. It has ended with the GI doc, or, rather, with his staff. I get the feeling that if he knew what amazingly "brush off" language his nurses use toward me he wouldn't like it. But I don't want to tattle, ya know, especially since it could be coming from him.

Of course, too, she has a cold that developed after her birthday party on Sunday. Great. We've upped the respiratory meds in hopes that they'll keep her safe.

[Lindsay1234]

Oh man, this must be so hard for you. This surgery is just a revision, right? So it wont be as complicated as before?
Just PUUUUUUSH those thoughts out of your head, shes come SO far and been through so much, this surgery is going to be a piece of cake!!!

[MotherWhimsey]

s
We'll be down there this weekend through monday or tuesday, so if you need anything brought to you or anything, just let me know.

[2boyzmama]

!!!!

I'll be thinking of you a lot...and of beautiful VeeGee...are you going to have access to internet to update us here and on FB?

Are you looking for another GI dr, or do you already have one? Is her constipation under control yet? Just can't catch a break, can you?

Hang in there...try going to bed at night intentionally thinking of positive things, her wonderful bright future, how happy your family is, how far she has come.

Do you have a plan for the loss of language? Is she still using her assistive communication device? Has she shown any interest in signing yet? That would be really hard for me to accept, if Connor lost more language You guys have tried so hard to get to where you are...you can do it mama!!!

[AndVeeGeeMakes3]

Originally Posted by Lindsay1234

Oh man, this must be so hard for you. This surgery is just a revision, right? So it wont be as complicated as before?

Thanks so much. It's actually just as complicated, perhaps more so since there's less room now to work. They're calling it a revision, but it's really a total do-over. But maybe it won't be as big of a deal. Let's hope!

Originally Posted by MotherWhimsey

s
We'll be down there this weekend through monday or tuesday, so if you need anything brought to you or anything, just let me know.

Thanks so much. I appreciate it. PM me when you're there (at the hospital??)!

Originally Posted by 2boyzmama

!!!!

I'll be thinking of you a lot...and of beautiful VeeGee...are you going to have access to internet to update us here and on FB?

Thanks so much. Yes, I will have internet, though it'll be sketchy til we get out of ICU. Probably will just update on FB since it's easy to do from my phone.

Are you looking for another GI dr, or do you already have one? Is her constipation under control yet? Just can't catch a break, can you?

Haven't started looking for one. Had a really nice conversation with one of his nurses today (not the one I've been dealing with) and it sounds like one of the issues I've been so frustrated about is actually on my pharmacy here (and the insurance co.). We'll see. No, it's not really under control, unless you count daily ODing on Miralax and that resultant delightfulness as"under control." Today is enema day. Yippeee!

Hang in there...try going to bed at night intentionally thinking of positive things, her wonderful bright future, how happy your family is, how far she has come.

Thanks, you're right, of course. It'll be fine.

Do you have a plan for the loss of language? Is she still using her assistive communication device? Has she shown any interest in signing yet? That would be really hard for me to accept, if Connor lost more language You guys have tried so hard to get to where you are...you can do it mama!!!

Her primary doc in the voice clinic said a BIG "NO" to the aug com device, and that was starting to be K's and my impression as well. She's just not interested in it. Her approximations and compensatory speech is so extraordinary, and growing like crazy (her ST is weekly amazed at her these days). So, I'm not all that concerned about language/vocabulary loss, or, even really her ability to communicate. She really does have a will to talk, so I think that carries her very far. Certainly, she's not clear all the time, but she's getting clearer, and her vocabulary is crazy huge (she's got what I always called in other children, "Only Child Vocabulary") and expressive. The loss will be more in the breath behind the sounds, which will definitely increase the quality of her voice (increased nasality) and her ability to project. But, in the whole scheme of things, eh, not too worried about that. I mean, I don't want to sound like I'm brushing it off. I just know that this has to be done, and that she was already going to have a life-long speech impediment, so why worry too much about it getting a bit more pronounced, yk?


As always, thanks, y'all, for the support!!!!

[pixiekisses]

Oh, many hugs and thoughts to you mama, and please let us know it all went fine (gotta stay positive) when she's had it. s

[AndVeeGeeMakes3]

Update

What a day!

Surgery was super quick. The doc was super NOT excited. He did find a little piece of tissue that he said might have been loose enough to cause obstruction, and he also narrowed the flap. He was not encouraging, though, about the possibility that this would solve the apnea, and strongly emphasized the impact this would have on her speech.

She was not herself when we got to the recovery room. Meaning: she was laughing and joking with the nurse, smiling. Normally, they're so glad to see us come so we can take control of her. She's usually a tyrant. What a weird difference.

In ICU now and the "Real Post-Op VeeGee" has returned. Mean and nasty! Whew, glad to have her back.

The resident said that he was hopeful that we'd go to the floor tomorrow (one doc even suggested some time later today, but I'd be really surprised if the main surgeon would ever sign off on that). Because she's tube-fed, we don't have to wait til she can eat, BUT, if they're going to wait until she has a bowel movement, wellllllllllll, we could be here in the fall.

[QueenOfTheMeadow]

I'm glad she is doing OK!

[queencarr]

So glad she is back to herself and that it was quick. I hope that it fixes the problem and she doesn't lose her speech gains. Been thinking about y'all today

[pixiekisses]

Good that she's doing ok! Hope she heals quick. s

[AndVeeGeeMakes3]

She kept her sats above 90 all night! This has never happened before. We're really happy.

Doc said that we'll be going to the floor this morning, and then, maybe, home later today! I can hardly believe that. It depends on her tolerating her feeds (which is ALWAYS our sticking point). So, cross your fingers that she takes it like the champ that she is.

[Lindsay1234]

Ive been watiing for this post (cause I KNEW it would come) all day!!!


YAY!!!!!!!

[pixiekisses]

That's awesome!!

[AndVeeGeeMakes3]

goin' home!!!!

[MotherWhimsey]

[momtoalexsarah]

Glad that the revision went well - it's scary when they have to redo something.
It's great to hear that her speech is comming along, it's amazing how much they pick up and know without being about to say it clearly. The speech impedimant is a bummer, but we know all about that here - Megans will be life long as well, he speech will never be "perfect" but she will get around it - you just need to have faith in that.

[2boyzmama]

YAY VeeGee!!!!

How's she doing after being home for a few days?

[AndVeeGeeMakes3]

I know, right?! I'm almost embarrassed at how well she's doing because people have seen us at the park and said, "She had major surgery???" Makes me kind of feel like I cried wolf!

She's just really doing well. So so pleased. Now to the trach stoma revision . . . . .

[pixiekisses]

Oh, how wonderful!

[2boyzmama]

Originally Posted by AndVeeGeeMakes3

I know, right?! I'm almost embarrassed at how well she's doing because people have seen us at the park and said, "She had major surgery???" Makes me kind of feel like I cried wolf!

She's just really doing well. So so pleased. Now to the trach stoma revision . . . . .

Too bad they couldn't do the trach revision at the same time...you'd think they'd avoid anesthesia with her at all costs.

[kinda off topic, but a local friend of mine was surprised that two of Connor's surgeries weren't combined, and *proudly* told me how she convinced her son's dr to do his circumcision when he had his ear tubes put in, so he didn't have to go through the pain of the circumcision. Nice that the drs will go out of their way to do a purely cosmetic surgery, but not to combine medically necessary procedures. And his was not medically necessary, he just hadn't gotten it done in the NICU, then had been too sick his first year of life, so when he got his tubes put in at 15 months, the mom somehow convinced them to circ him. SIGH.]