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skye liela's mummy
03-09-2010, 03:12 PM
Well its been i very long day at the hospital,skye sats have been slightly down today sitting at 90,when i went to pick her up from recovery she was very distressed and was needing oxygen.
consultant came to see us and after the bronch last wk when she was awake and he said there was no change,today he said there was some signs of movement,more in the right one ! but there far from normal.she also has some granulomas on the inside of her stoma.
so he wants her back in in 2 wk to have them removed,he went on to say that he wants to try capping her whilst she is in,this really frightened me ! he said he suspect she will fail due to her stuggerling to breath after the ltb with the amount of secretions but wants to give her the benifit of the doubt.if she fails then he will upsize her.
my questions are,how does decan work ? im lead to belive that if she tollerates capping for 12/24 hours then they will decan there and then and send us home so im worried because of what happend to nadia. do they put a special kind of trach in before they cap ? like one with a hole that goes up the way or something. and i thought that they would capp slowley at first then increse the time it stays on ??
any help would be great got so many thoughts going through my head,i just carnt forget what she was like before trach and am worried this will happen again !:(

JWorthington
03-09-2010, 04:10 PM
oh my, I can understand you being worried. Sam was capped during waking hours for a couple of months before he was decanned. he was then admitted foir 24 hour capping and the trachy was removed the following day. it depends on the hospital and doctor. who sees Skye? Sam goes to Birmingham Children's and they tend to be pretty cautious there. a lot of doctors will send you home with a cap with instructions to build up the length of time she wears it. sometimes they downsize before decann too, though Sam wasn't downsized. good luck, hope it goes well. feel free to pm me if you have any questions:hug:

bryantem
03-09-2010, 04:13 PM
Here, they will put in the smallest trach that they have (usually a 3.0) and will cap and monitor them. They can breathe around the trach, but sometimes it might be labored because they don't have a completely open airway. If they cap fine, they pull the trach out and will monitor them for a while.

skye liela's mummy
03-09-2010, 04:35 PM
yes thats what i thought capping slowly,i would even be happy comong home with cap rarther that nothing to start with ! she already has the smallest in shiley 3.0 neo.
she is at the queens medical centre in nottingham.
so do they leave the trach in that they have already got in and cap that ? surely that would take up space in the windpipe and therfore not be able to breath properly anyway regardless ? or am i barking up the wrong tree.

Big Al
03-09-2010, 06:03 PM
Make sure that all your specialists are on the same page, ENT was very agressive about decanulating S, this led to him becomming distressed at home and being admitted back into the hospital. When i called the ENT resident at three in the morning he pulled S's records and said "oh yea it looks like he was having some distress when we had hime on the unit" Gerr why did they discharge a child who was decanulated and was having distress while asleep! he was readmitted and had to be re trached. Pneumo was livid they wernt even consulted about the decanulation and said there was no way they would have signed off on it.

Ainsley's Mom
03-09-2010, 08:43 PM
yes thats what i thought capping slowly,i would even be happy comong home with cap rarther that nothing to start with ! she already has the smallest in shiley 3.0 neo.
she is at the queens medical centre in nottingham.
so do they leave the trach in that they have already got in and cap that ? surely that would take up space in the windpipe and therfore not be able to breath properly anyway regardless ? or am i barking up the wrong tree.

A child with an adequate sized airway will be able to move air around the cannula fairly easily. That's not to say there may not be other issues. Also a child can have difficulty if they aren't used to the sensation of air moving through the airway even if the airway is adequate. Then of course there are all the kids that have multiple issues or things aren't as clear. That's way some ENT's take the more conservative approach of building up capping over time. But there have been kids who can tolerate capping right away. I'm wondering if your ENT suspects she may be able to do it because she's been able to get enough air despite the granulomas. But if your gut is telling you it's not realistic you could ask to change the plan. As an alternative they could see her in clinic with a cap and if she looks good they could allow you to take one home and then you could work on home capping for awhile before taking the next step at the hospital since that's expensive. I hope good things are in store for you!

skye liela's mummy
03-10-2010, 05:21 AM
the consultant said he suspect she will fail but want to at least try.
sorry got more question !! lol
when they cap,what do they look for to see if they can tollerate it ?
is it just that they can mantain the sats ?
what happens if the child maintains there sats but have a loud strider and having to work a little harder or
do all children that are cap then have the strider just becaue the tube is still in the way ?
when they are capped should you be able to hear them breath or is it just like listning to a normal child when they breath ?
sorry guys for all the questions,everything went out my head yesterday and only since i got home all this is coming into my head !

JWorthington
03-10-2010, 05:50 AM
usually they will be placed on a monitor to check sats and heart rate. if they get distressed then they will stop. the first time they tried a trial decann with Sam when he was 19 months old, his sats dropped into the 80's and heart rate was over 170 so they decided to stop. the breathing should be relatively normal, if they are working too hard to breathe then they won't consider decan

skye liela's mummy
03-10-2010, 06:11 AM
thank you julie thats great gives me more idea,they havent explained anything to me,

Wooders80
03-10-2010, 02:54 PM
Dominic was downsized about a month before the trial decann from a 4 to a 3.5. We were told to use speaking valve as much as possible, as children who wear speaking valves apparently have more success with decannulation - it really helps get used to the sensation of air moving in the upper airway and handling secretions. On admission for the decan they downsized to a 3.0 and monitored, after 24 hours they then capped it. Once the tube is blocked you cannot suction or anything (otherwise it is a fail) as they have to be sure the child can handle secretions. We then had 24hours of capping, then the tube was removed and had to stay in hospital for another 48 hours to be monitored. The main things they look for are o2 saturations, heart rate, noisy breathing and retractions.

I read a paper somewhere about how long a child should stay in hospital after decann, and basically if they can manage 48hours, things should be ok. The link below is useful too.

Oh yes, and good luck! Sounds fairly positive to me - at least they think it is worth trying.

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

Ainsley's Mom
03-10-2010, 03:46 PM
the consultant said he suspect she will fail but want to at least try.
sorry got more question !! lol
when they cap,what do they look for to see if they can tollerate it ?
is it just that they can mantain the sats ?
what happens if the child maintains there sats but have a loud strider and having to work a little harder or
do all children that are cap then have the strider just becaue the tube is still in the way ?
when they are capped should you be able to hear them breath or is it just like listning to a normal child when they breath ?
sorry guys for all the questions,everything went out my head yesterday and only since i got home all this is coming into my head !

Like Julie said she'll be monitored, for heart and respiration rate as well as O2 level. If she's working too hard they'll stop the trial. Some kids can (I think) wear a cap with no perceivable difference to their breathing. But I think it is also common that there is some degree of difficulty because the cannula is in there taking up some of the airway room. What I think that means is that for kids that are in the "shades of gray" area that there is a tolerance for a small increase in work of breathing. But there is a point at which it's too much. I hope your ENT explains what they'll be looking for before they start. Maybe they can give you some numbers so you know how she is doing during the trial. Likely the monitor will be set to alarm if it goes falls to a certain number. Good luck! I hope it goes better than expected.

faywrayy
03-10-2010, 07:34 PM
Can't add much, just our own experience. Kate was unexpectedly decanned in a similar way -- brought in for reconstruction and it was determined she didn't require it anymore. They downsized her from a 3.5 Ped to a 3.0 Neo at 3p that afternoon. They capped her at 9p that night. She passed a restful night, normal sats, HR, respiratory rate. No retractions and no increased work of breathing. next morning, the resident said she was "a peach", was totally fine overnight and they took her trach out at 9a that morning. DONE. I realized later on that she must have looked really fantastic for them not to have required a sleep study prior to decann -- and by fantastic I mean no increased work of breathing, no retractions, no lowered sats, no elevated HR or RR. Nothing - just a kid sleeping in the bed. That was 20 mos ago and she hasn't had any issues at all since decann.

Best of luck!