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View Full Version : after decannulation surgery...


saywhatyouwill
04-27-2009, 07:21 AM
...how quickly do they recover? i know it's obviously different depending on what kind of op, what the issues to fix were, whether they were any complications etc...

but once they are discharged: do they usually need extra care at home? how long to recouperate?

i'm thinking in terms of going back to nursery (pre school), going outside, me going back to work, travelling. all that stuff.

it would be helpful to hear even if people had totally different experiences. at the moment i feel like we have zero clue what to expect.

rea74
04-27-2009, 05:23 PM
I think it all depends on the kid and the issues.

Thankfully, we didn't have to bother with a surgery. Mikayla coughed her trach out, and it closed up within a matter of minutes. She had no issues with it being out, and the doctors decided to leave it out after a weekend of observance in the PICU to make sure she kept her sats up.

Now, we're looking at her being scoped this summer due to lack of vocalization, and may end up having to do something there - even if it's stretching her chords to loosen them from possible scar tissue from the vent when she was in NICU. But, we'll see how that goes when summer gets here! :)


Good luck though! Certainly hope that all goes well for you and your little one!

KJKK8437
04-27-2009, 05:42 PM
For Alex's single stage, we came home on lots of meds. I would presume that no matter how well your kid handles the meds, you don't want them back in nursery until they are fully weaned.

Alex was in the hospital for 2 weeks. Before it was even over, I was leaving the hospital for the nights and letting my mom stay over. He was well enough for that. So, physically he was fine.

But, after we got home, he needed some extra care -- still woozy, eating sporadically, sleeping at odd times -- more than the usual number of naps in a day. Most of this was med-induced, but some of it was healing. This gradually improved over about 2 weeks. Then, rather abruptly, we added some nightmare issues that we struggled with for awhile -- he'd wake up screaming and was desperately afraid of his bed.

If Alex were in daycare, I'm not sure when I might have decided to put him back into care during this process. In hindsight, he needed two weeks to wean the meds plus a few days to get used to not being drugged out.

But, you definitely need other opinions. I think our medicine experience was the opposite of most. We wanted the meds off sooner, and I've read n the archives lots of families that were asking for more medicine. This can really impact how well your child feels and to what extent you feel comfortable leaving them.

bryantem
04-28-2009, 01:09 AM
I don't know from experience, but I was told by our PICU that usually they are admitted and capped for 24 hours. After that, they take the trach out and send them home with a bandaid. I have been told many times from our pulm that Arizona is weird with medical care.
________
Rgv500 (http://www.suzuki-tech.com/wiki/Suzuki_RGV500)

KJKK8437
04-28-2009, 06:30 PM
Claire -- I recommend reading Parker's blog. It will give you a good sense of how things progress, medically, with respect to the surgery. Suzanne (Suzanne2545) did a good job of summarizing their journey. I did not do so well on our blog -- we didn't have an internet connection in the hospital and I never went back and talked about the surgery much after we were out. The blog addy is in her signature.

Which way are you thinking of going for surgery -- or are you still trying to figure it out?

saywhatyouwill
04-29-2009, 04:55 AM
Claire -- I recommend reading Parker's blog. It will give you a good sense of how things progress, medically, with respect to the surgery. Suzanne (Suzanne2545) did a good job of summarizing their journey. I did not do so well on our blog -- we didn't have an internet connection in the hospital and I never went back and talked about the surgery much after we were out. The blog addy is in her signature.

Which way are you thinking of going for surgery -- or are you still trying to figure it out?

thanks, that's a good suggestion.

we still don't know - her mlb has been put back to mid-may so hopefully we'll get a better idea then.

can i ask whether you felt ready for it? both my husband and i almost seem to want to put it off, because life is great at the moment, the trach doesnt' both us or emily, and the thought of hospital is scary. although i know obviously things will be even better for her once the trach is gone.

sorry if that's too personal a question.

KJKK8437
04-29-2009, 01:59 PM
thanks, that's a good suggestion.

we still don't know - her mlb has been put back to mid-may so hopefully we'll get a better idea then.

can i ask whether you felt ready for it? both my husband and i almost seem to want to put it off, because life is great at the moment, the trach doesnt' both us or emily, and the thought of hospital is scary. although i know obviously things will be even better for her once the trach is gone.

sorry if that's too personal a question.

Oh, I don't know if I have a good answer to that. Yes ... and no. We were in a really good spot, too, when the LTP came around. I was terrified and exhilarated all at the same time. The day couldn't come fast enough, and it came too soon.

But, I would say that of all the surgeries Alex had to have, this one was by no means the worst, and I knew that. The one I dreaded so much was the first jaw surgery, and if we came close to breaking anywhere on this trip, that was the surgery that almost broke us. I took a perfectly healthy kid into the hospital, and beat him up like nobody's business. I sat in the waiting room waiting for the surgeon to come talk to me, and I remember thinking, "oh, crap, it's too late to change my mind and just take him home." Of course, that isn't what I would ever have done, but that shows how ambivalent I was emotionally about taking that step.

By comparison, the LTP was easier. I was frightened, and I dreaded it, but I knew that we were buying back something very important -- a freedom for Alex that every child deserves and that I wish for every kid on this Board each and every day. I just hung on to that for all I was worth. And, unlike the jaw surgery, the surgery was a joyful experience for us.

saywhatyouwill
05-01-2009, 03:35 PM
By comparison, the LTP was easier. I was frightened, and I dreaded it, but I knew that we were buying back something very important -- a freedom for Alex that every child deserves and that I wish for every kid on this Board each and every day. I just hung on to that for all I was worth. And, unlike the jaw surgery, the surgery was a joyful experience for us.

exactly. i need to focus on that :-)
thanks.