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View Full Version : bronch this morning, and other news


kadiera
03-04-2010, 04:14 PM
It's been an eventful week here.

Yesterday was the urologist. They're ready to do surgery, but based on their schedule and ours, it's looking like mid-to-late April. No definite answers on how long the surgery will be, or whether it will be one, two, or more than two surgeries.

However, if it takes more than one, we have to wait at least 6 months to do the next one...which puts us into October.

Today's bronch, there was a single remaining cyst which has been drained. Alexander's airway looks "irritated" so they want us to give prilosec to ensure he's not refluxing....but considering that he pukes less now than he did at the time of his last bronch 6 months ago, I think it's more likely that the nearly 2 months of post-nasal drip is the problem.

All that aside, the ENT's statement was that when the pulmonologist got Alexander off his oxygen, they were ready to decannulate. When I told him the pulmo was ready, O2 or not, except for this planned surgery, he looked baffled and said, "oh. um. well, then soon I guess"

And maybe that's the right way to go - surgery this spring, decan this summer to nasal cannula, and work on getting either the O2 or viagra weaned down before winter, then put the other surgery (assuming there is one) off until next spring..... Lots to think about.

babybear
03-05-2010, 07:57 AM
Wow, what exciting news!

I hope things go as planned and Alexander can join the "Naked Neck Club" this summer. :)

KJKK8437
03-05-2010, 08:12 AM
Looking forward to hearing a lot of good news coming up.

JWorthington
03-05-2010, 09:48 AM
Phew, a lot going on. Sam ended up having a 3 stage procedure (no fun) and they wanted to keep the trach until he'd finished with the urology stuff (made it easier for the anaesthetic). Hope you get the go ahead for decan, that would be awesome!:)

kadiera
03-05-2010, 10:40 AM
Phew, a lot going on. Sam ended up having a 3 stage procedure (no fun) and they wanted to keep the trach until he'd finished with the urology stuff (made it easier for the anaesthetic). Hope you get the go ahead for decan, that would be awesome!:)

Yeah - I'm still torn on that. Urology doesn't want to mess with the "extra concern" of the trach - they wanted him off the vent, and they'd be happier if he was off O2....and I'm thinking, well, you'd likely intubate for a surgery this long anyway, so why is the vent an issue?

They're also apparently being very evasive when asked how long surgery will be, or how many surgeries. Barry has handled all the appts, but all he gets from them is that it may be one surgery, or it may be 3 or 4, but 2 is most likely. Barry finally said, "well, if you don't finish, how will he pee between surgeries???"

And it's outpatient?!?!?!

Seriously....it took almost 2 hrs post bronch to get Alex to wake up yesterday. It took all afternoon for his sats to really get back to baseline. And that was for a 40 min procedure, not for something requiring actual cutting or pain relief, so I just don't understand how that can be outpatient.

The ENT doesn't seem to care either way when I've brought up keeping the trach through the second surgery (assuming there is one), but we have a follow-up appt to the bronch to schedule, and I plan to ask him outright about that possibility, and about his opinion of the risks of intubation later if we do decannulate

I don't think anyone's going to push for decan while Alexander is still on oxygen, so it could still go either way.

twintotwin
03-05-2010, 11:07 AM
So Janet, are you pushing to keep the trach? I'm in a hurry so I got confused reading your posts. There are many (obvious) reasons to keep it for the upcoming surgeries...but there is also the possibility he won't need O2 once decanned. Sometimes the closed stoma gives the kid more PEEP and they end up coming off 02 soon after decan.
The other thing is...I'm not sure which type of surgery uro is doing on Alexander but with my twins, the docs always give it the "wait and see" thing - see how they're doing before committing to send them home that day. Ask them to have a bed avail in case Alexander isn't ready to go home (especially considering the way he handled the anesthesia after this past bronch).

Is this a pedi uro? Sounds like they aren't comfortable with something...?

kadiera
03-05-2010, 12:01 PM
So Janet, are you pushing to keep the trach? I'm in a hurry so I got confused reading your posts. There are many (obvious) reasons to keep it for the upcoming surgeries...but there is also the possibility he won't need O2 once decanned. Sometimes the closed stoma gives the kid more PEEP and they end up coming off 02 soon after decan.
The other thing is...I'm not sure which type of surgery uro is doing on Alexander but with my twins, the docs always give it the "wait and see" thing - see how they're doing before committing to send them home that day. Ask them to have a bed avail in case Alexander isn't ready to go home (especially considering the way he handled the anesthesia after this past bronch).

Is this a pedi uro? Sounds like they aren't comfortable with something...?

I think I'm not sure whether to keep the trach or not :) Obviously, we'd rather get rid of the equipment and hassle, but we'd also rather not rush Alexander, because he has a history of crashing when pushed "too hard" (though maybe he's outgrowing that too).

And yes, a pedi uro - head of the peds side of the dept here, and 2nd in line for the whole uro dept. I really suspect they're not comfortable with the trach....but I also get the feeling maybe they're not used to people who have so darn many medical questions, rather than just "so fix it already" :)

mum2dylan
03-05-2010, 12:34 PM
Hope everything goes to plan with the surgery(s) & maybe hopefully by getting traci out soon,Alexander may be able to wean off o2 quicker..

twintotwin
03-05-2010, 03:30 PM
Janet- How old is Alexander?

lynn
03-05-2010, 04:29 PM
I would really want to know the opinion of the ENT about possibility of future need for intubation and the damage it may cause the airway. This is the main reason at this point our ENT and pulmo have decided no more weaning off the vent for more hours.. we have upcoming surgeries, and will most likely be put back on a vent during recovery so why really push the issue now to have to backstep again.. once the surgeries are finished; we ALL have agreed to try to push sprinting/capping and decan.

I would really want to know why the ped urologist is so worried about the trach being in place also; have you talked to anesthesiology? I know our anesthesia dept is relieved when they see the trach-they can put him under with gas before trying to run IV access and they dont have to worry about intubating him.