2 Year Post Decannulation - Now she's leaking air

[AndVeeGeeMakes3]

This morning VeeGee was coughing while sitting in my lap, and I thought I heard a little whistle/squeak sound coming from her neck. I had her cough again, and put my finger over the stoma scar, and, sure enough, a little bit of air was escaping. Of course, it's not a gash, or we'd have noticed, but now that we've heard it once, we're hearing it a bunch.

Is this something we should be concerned about? Anyone know what's next? We're three hours from her ENT/Otolaryngologist and surgeons and I have a message in to them, so I'm wondering if I need to pack her up and start heading that way in the morning or if it's a wait and see kind of thing.


Background: she also has a nissen and so she retches and coughs pretty violently and frequently. (She's got Pierre Robin, btw., and is 4.5 yo.)

Thanks for any help y'all have!

~ Wendy

[2boyzmama]

I have no idea, but my first guess is to treat it like you did when she was first decannulated. What did you have to do before the scar formed? Cover it with something? Keep it dry? moist?

??

[AndVeeGeeMakes3]

Yeah, I talked to my FIL (a nurse) and that's what he said (just keep it dry). He said that it's really unusual for it to open this long afterward, but it really seems logical since she always seems like she's going to explode from retching or coughing. I've got an e-mail in to her ENT, so I'm hoping he will answer early tomorrow. I teach from 9 to 8:30 on Tuesday, so this kind of sucks if I have to take her to Nashvegas then.

What I do know is that this means surgery, regardless. Which really sucks A$$. As you know, we've been really making progress. In fact, K and I were just talking about how it feels like so much longer than eight months since the last surgery (crazy, huh?). Maybe we can hold off until summer, or maybe it's a quick fix. I can't get a read on it since I haven't found any cases in which there was this much time before it "blew."

[MotherWhimsey]

If you do have to come to nashvegas on tuesday we'll be there too! We could meet up at the "biltmore" as my kids call it. We just got finished with a 9 day stay at "the biltmore" and my mom (just being funny) brought the little bottles of shampoo and conditioner that you get at the real Biltmore. She said she was just helping make the illusion a little more complete. lol

[AndVeeGeeMakes3]

bump?

[AndVeeGeeMakes3]

So, surgery to repair the fistula has been postponed until we find whether the cough that seems to have caused the fistula is pulmonary or GI in origin (she has both issues). They're sending her for genetic testing (2/25) to rule out (or in) FAS* (grrr) and 22q, among other things. They're not going to repair the fistula until they figure out if this weird cough is pulmonary or GI. They're also doing a sleep study to see if she's got apnea. Which would be really bad because that would necessitate a repair to the p-flap because he used part of the adenoids to do it. I asked about the fact that some of that type of breathing was expected relative to the p-flap, but he said that she seems worse than would be expected.

I'm so sad. And it's really hard to make anyone understand it. I mean, I was feeling really hopeful recently, like we were starting to see glimpses of a modicum of a "normal" life. And then there's this. The doctor (whom I LOVE) said, "Wendy, she's not just a regular PRS kiddo. She's MUCH more involved than that."

He wants to get the entire aerodigestive team together to look at her at the same time - do a swallow study, etc. - and figure out where to go from here. I'm really glad that he's pulling in the whole team. It's been a couple of years since we've been on the team approach, so it's good to get back in there. But, at the same time, it's sobering.

And now she's laying here retching like mad after only 500 ml of food (in an hour). Stuff's oozing out of the trach hole (not a ton, just a tiny trickle, but still . . . ). Ugh. And she's running a fever.

I don't want to take her to the doctor here in town for the fever because I don't want them to freak and hospitalize her and put new hands on the problem. I'm worried about it, though, since I assume she's at a bit higher risk of infection due to the fistula; or at least that infection is potentially more serious because of it.

*She was adopted out of foster care.

[2boyzmama]

I already messaged you on facebook, but I wanted to hug you here, too!!



And I don't think you mentioned the fever...poor VG!!! Connor is sick, too (croup), so maybe it's just a small winter bug and she'll rest and be fine.

Give her a hug for me!!!

[AndVeeGeeMakes3]

Thanks! Bummer about Connor, too. I do think it's just a bug for VeeGee, since I'm also fighting something. BooHiss.

Hugs all around!!!!!

[2boyzmama]

My husband and I both have scratchy throats, and we're whipped, although the last two nights have involved very little sleep, so we weren't sure if we were truly under the weather or not. Until Connor woke up this morning barking. It was after I left for work, but apparently it was really bad, my husband had him in the bathroom with the hot shower and his inhaler and was texting me. I guess once Connor calmed down he was better, so we haven't called pulmo yet, but if he starts bronchospasming again, then we'll end up there today. BOO!!!

I really hope that you BOTH are feeling better quickly!!! I hate winter...for the illnesses anyway...I love the snow! In fact, I bet that's why Connor is sick, we had warm weather over the weekend, then had snow yesterday and today, it's the change in weather that gets him every time!!! I wish it would just stay cold or stay warm!

[bamamom]

Originally Posted by AndVeeGeeMakes3

So, surgery to repair the fistula has been postponed until we find whether the cough that seems to have caused the fistula is pulmonary or GI in origin (she has both issues). They're sending her for genetic testing (2/25) to rule out (or in) FAS* (grrr) and 22q, among other things. They're not going to repair the fistula until they figure out if this weird cough is pulmonary or GI. They're also doing a sleep study to see if she's got apnea. Which would be really bad because that would necessitate a repair to the p-flap because he used part of the adenoids to do it. I asked about the fact that some of that type of breathing was expected relative to the p-flap, but he said that she seems worse than would be expected.

I'm so sad. And it's really hard to make anyone understand it. I mean, I was feeling really hopeful recently, like we were starting to see glimpses of a modicum of a "normal" life. And then there's this. The doctor (whom I LOVE) said, "Wendy, she's not just a regular PRS kiddo. She's MUCH more involved than that."

He wants to get the entire aerodigestive team together to look at her at the same time - do a swallow study, etc. - and figure out where to go from here. I'm really glad that he's pulling in the whole team. It's been a couple of years since we've been on the team approach, so it's good to get back in there. But, at the same time, it's sobering.

And now she's laying here retching like mad after only 500 ml of food (in an hour). Stuff's oozing out of the trach hole (not a ton, just a tiny trickle, but still . . . ). Ugh. And she's running a fever.

I don't want to take her to the doctor here in town for the fever because I don't want them to freak and hospitalize her and put new hands on the problem. I'm worried about it, though, since I assume she's at a bit higher risk of infection due to the fistula; or at least that infection is potentially more serious because of it.

*She was adopted out of foster care.

I have to say I nearly hit the floor when I read 500 ml / hr.

I have a fundo kid and he had an open full nissen and only now 3 years post op and with a loosened fundo is tolerating 98-100 ml/hr with no retching.

500 ml /hr is shocking. Did GI tell you to feed her that fast? Retching is pure misery. Why don't you slow her down and let her belly rest? I can't imagine , plus, you could accidentally damage her fundo or ruin her motility running her that fast.

I have never known a child of any size, age, condition or motility who could tolerate 500/hr. never.

please call GI or slow her down. Please. She's got to be miserable.

[Liba613]

I think that the 500ccs of formula might also be a part of the issue. I have heard of kids tolerating 125ccs in 15 minutes, which mathematically is 500ccs/hr but stomach isn't forced to stretch as much when the volume isn't as much.

The combo sounds like a lot!

Could you talk to your GI or dietitian about doing 30 minute feeds of 250ccs more frequently to see if she tolerates them better?

I am sorry about the complications, worry and illness!!

[AndVeeGeeMakes3]

The GI and her ped do know about the rate. BUT, I do think y'all are right, and we've slowed it down. One of the reasons that we started doing it like that was to simulate three meals - and do three feeds. She fights like mad against the tube, so we wanted to limit number of feedings and time of feeding or else she starts freaking out.

At this point, we're letting her freak about that instead of the chance of messing up the nissen. Thanks for the confirmation. We walk such a tightrope because she cannot get enough calories AND stay off the tube for most of the day. She's very active, and, while we've got an awesome Zevex pump which she can carry, we're trying to get 1250 ml in her a day, and that's been really difficult.

On the other front - she developed pneumonia so fast it makes my head spin. Between Tuesday and Thursday her ears went from just fine to inflamed and her lungs went from clear to pneumonia. I always am amazed at how quickly she turns. She's MUCH better now, though, so I'm glad we went ahead and got her in to the doc on Thursday (I was just scared that he was going to hospitalize her and I hate the hospital here).

The fistula seems to be getting larger. And now it's changed her voice - we're back to the nasal sounding voice we heard before the p-flap/sphincteroplasty. I hate that. We're doing a sleep study on the 18th, geneticist on the 25th, and then the full aeorodigestive clinic on March 12th. It feels like a long time to wait, but time's flying (Feb First?!!!!).

Well, thanks y'all, once again, for being the sensible ones. (Thanks, Sam, for reminding me to check here!)

Wendy

[2boyzmama]

Ugh, poor VG!

And I guess I spoke too soon when I told you on FB that Connor was better, he woke up covered in snot and with a fever this morning I've got it full-blown now, too. And Ian, too. Our house is a big puddle of snot. (that's a gross mental image!)

I know nothing about tube feedings...sorry I can't help more! Too bad she doesn't tolerate a constant feed, that seems like it might be easier on her Nissen. Why does she fight the tube so much you think? Is it a sensory thing, or just a "I don't want to be messed with" thing?

Is she eating anything by mouth right now? I know she was starting to try some foods recently... (I thought of her when I had some whipped cream recently )

[queencarr]

I know nothing, but just wanted to send hugs. that is a lot of appointments and stress in a short time, plus all the worry! And poor VG has to be just miserable. Sorry your smooth sailing hit a road block!

Would she tolerate continuous feeds at night and smaller mealish feeds during the day? Or does that mess with the respiratory issues, not being upright? This is a big reason we have not limited Isaac's high calorie bottles at night--he can't physically eat enough calories during the day safely (disorganized swallow after a few bites, so small frequent meals only). When calories were an issue for Jimmy, we also encouraged night nursing as we were told the alternative would likely be a feeding pump at night. I was night nursing (long sessions, not snacking) a 3yo every 2 hours

[MotherWhimsey]

yeh, at first I thought that rate was a typo. That's crazy fast. I'd do night feeds if she can tolerate them and then do three smaller boluses during the day. That way you're only having to fight her one extra time a day.