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Wooders80
01-20-2010, 11:38 AM
Dominic's review this week went really well and he has been down sized. I can't believe how much better he now tolerates the PMV - and he has only been downsized from a 4.0 to a 3.5 ped. The next step is to admit him to the ward for a few days for a trial decannulation trial. Anyway, for those of you whose children have already been decannulated in this way, how did it work? Any hints and tips?

My main concern is the fact that I won't be able to suction Dominic after he is capped. He has always had quite a few secretions, particularly when he first wakes up.

JWorthington
01-20-2010, 11:46 AM
Sam was capped for 24 hours on the ward and we were told not to suction unless absolutely necessary. we were fine, he had no secretions. he was monitored overnight and the following day they just took the trachy out. Then he was monitored for a second night without the trachy and allowed home the following morning. It all went pretty smoothly (surprising for us!)
Is Dominic being capped at home during the day at all? we sleeked off Sam's speaking valve during the day for a few weeks before so it wasn't too traumatic.

Good luck, let me know if I can answer any more questions xxx

saywhatyouwill
01-21-2010, 03:36 PM
emily was capped for a full 48 hours. not being able to suction was REALLY hard! obviously the tube and the cap get really gunky.

at one point ENT advised us to suction for one time, but i can't remember why that was.

then on day 3 they took out the tube and put an airtight bandage over the stoma. then they looked to see that she could eat and drink. she couldn't drink properly, so we got stuck on the ward for a bit until she stopped aspirating quite so much. usually they monitor overnight as a minimum. you get hooked up to your sats monitor for the first hour or two.

i think in some places they cap in the day, then uncap at night, to start with.

have you seen this?

http://www.ich.ucl.ac.uk/gosh_families/information_sheets/tracheostomy_ward_decannulation/tracheostomy_ward_decannulation_families_booklet.h tml

Wooders80
01-22-2010, 12:19 PM
Yes, I've seen this, and it is pretty much what will happen at GOSH. I just was curious to hear how other places did it, any problems that were encountered etc.

I'm trying to suction less now, as Dominic is doing really well at wearing his PMV in the day, but it is so hard isn't it? I hear noisy secretions and I just want to suction. Dominic seems to let them just rattle around before deciding to cough them up.

Also a bit worried as Dominic declared today that he likes his new smaller trachy and doesn't want it out!

saywhatyouwill
01-22-2010, 03:24 PM
ah, laura, it just is hard! leading up to decan i was thinking, well, she shouldn't really NEED to be suctioned, and yet i still had a couple of days in the car where we had to pull over for ages when she coughing up really stinky stuff.

i think they adapt to whatever suits the child. they weren't sure that emily would handle a cap cos the trach was taking up so much of her airway, so plan b was to just decannulate w/o capping off at all.

MegansMom
01-24-2010, 11:06 AM
I was wondering the same. ENT thinks we should decan by downsizing in the hospital and taking it out and watching her for 24 hours. Pulm is not wanting to work it this way but fail to understand tracheitis infections are keeping her from her PMV and then capping. We just spent 10 days in PICU for a bacterial infection they thought was pseudomonas but it actually was something that looks like it in the culture but after 7 days the lab finally positively made an ID Alcaligenes xylosoxidans. It has been hanging around since early November and was resistant to everything except only a couple of IV Abiotics. I think Megan will do well but am very scared of the what ifs..

Niff
01-24-2010, 11:48 AM
Is it standard in the UK to always cap? Is there no way around it?

Our Children's doesn't believe in capping. They pull the trach while the kiddo is in the OR (after the bronch). If the child tolerates it, they transfer him/her to the PICU for observation.

How is Dominic's hemangioma? Do you know what percentage of occlusion he's at? We were told that trach kids were picky about their airway and sometimes the slightest obstruction will upset their tolerance. (We asked what % occlusion would be safe for decann and our ENT flat out said there was no telling because trached kids are used to having a completely patent airway.)

Babystone06
01-24-2010, 12:29 PM
Our daughter was decanned two weeks ago. We live in orlando and our ENT is VERY cautious so he had us stay in PICU for several days while they downsized her trach. Our daughter started with a 4.5 when she went into the hospital. The ENT did a bronchoscopy and then downsized her to a 3.5. The next day she went down to a 3.0 and capped. The day after that they removed the trach. She was monitored without the trach for 24 hours and then released from the hospital.

I should mention before we got to where we are today. Katelynn was on the vent slowly being weaned off. Last year she was only on the vent at night. She was using the PMV during the day. The first week in December she came off the vent and went for a sleep study with the cap on. She did well and then the Pulminologist told us that we could procede with decan but It was up to our ENT how he would do it.

I'm not sure if this process differs outside of the states :)

Wooders80
01-24-2010, 12:49 PM
I think capping varies from hospital to hospital in the UK too. Downsizing to a 3.0 and then capping for 24hours prior to removal is what will happen for us too. They won't decann unless you can tolerate capping, yes it it harder work breathing that way than with the trach out, but I think the thinking is that if they can pass this challenge, the airway is good enough to manage colds etc.

Niff, Dominic's LTR in the summer excised his haemangioma so his subglottis is now, to quote the notes from our last MLB "widely patent".

Niff
01-24-2010, 01:30 PM
Well dang I completely missed that post! Congrats!!!