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Old 02-27-2011, 07:02 PM
JLSHAW2 JLSHAW2 is offline
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Default What does it look like when weaning from the vent?

Hi Everyone!

So, our dd is going to begin the weaning process off of the vent in the fall. I know it's not even quite March, but dh and I are trying to wrap our brain around what this will look like, how long it takes (if it is successful), the ups and downs, good and bad, etc.

Anyone wanna share your "real-life" experiences with us so that we can mentally and emotionally prepare? We have 5 kiddos (one foster) and one due on April. We want to make sure we are ready for this and give Alicen the BEST shot possible.

Thanks SOOOO much in advance.

jENN
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Scott and Jennifer
Elayna 11, Ethan 10, Gracie 4 (adopted!!), Alicen 1 (adopted!!) and Meghan (Due April 22, 2011)
Alicen was born at 29 weeks, drug addicted. BPD, Tracheomalasia, GJ feeding tube. On vapo-therm and c-pap. Intubated at 1 month. Trached at 3.5 mos. Hospitalized for 1st year of life. Finally home at 13 mos!
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Old 02-27-2011, 08:19 PM
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kadiera kadiera is offline
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I think, start to finish, it took us about 6 months. We started with 30 minutes off, twice a day, and upped it by an hour a week (so, the second week it was 1 hour off twice a day, etc). We went a lot faster with night weaning, because by then Alexander was more than ready to be off. We had a couple of setbacks here and there through it, but that's typical for Alexander.

Off vent comes with a lot more secretions than on - suctioning every few minutes as they come off, because the vent's pressure isn't there to keep the secretions back. We also had to do some experimenting to figure out what worked for Alexander off vent - we couldn't get him to sat well no matter what we did with a mist collar, but he's just peachy with an HME 24/7, and not too dry. Other kids are different, and really need the humidity.
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Janet, crunchy pagan automotive engineer mom to Alexander, born at 27 weeks, 1 lb 7 oz | vent/trach/gtube @ 5 months for BPD | g-tube free 7/11, trach free 8/11. Also mom to Bethany born @ 28 weeks, 2 lbs | gtube @ 5 months | trach/vent @ 6 months for BPD, bronchomalacia, trach free July 2014!
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Old 02-27-2011, 11:09 PM
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drct1245 drct1245 is offline
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Start to finish, it took us about a year. These special children have their own ideas. We actually started at 15 minutes -1x a day and up'd the time 15 minutes every 2-3 days, until 1 hr. Then we added 2 more sessions starting @ 15 minutes and increasing. After that, we started adding 1/2 to 1 session every few days until we could blend some together. We did keep our son on the vent for naps and night. Ayden had a major cold right when he was only the vent 2 or 3 hours and we were just going to take him off. He had to go on the vent for 24 hrs otherwise he was inconsolable. We got him back down to 2-3 hrs a day within 2 days. Ayden was off the vent in June, he got downsized on the trach, got him wearing a on a PMV valve for an entire day within a month and he was capped to the point where his pulm and ENT were comfortable and he was decanned 8/8/08, 2 months after getting off the vent. Mind you, Ayden's *only* issue was his lungs. He had no structural issues.

Bottom line, go with what your gut says... everything should feel natural and normal. Your daughter shouldn't be stressed over it, if she is...she may not be ready. Is she on CPAP now?

Oh and we made a schedule on a calendar, this way the nurse knew exactly what they had to do. They initialed off who completed the trial. Ayden came off the vent and had oxygen and when he was decanned he also was still on oxygen. So it can be done!
good luck!!
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former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 -
Follow decan at: http://sleepy-dogs.blogspot.com/
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Old 03-01-2011, 08:37 PM
Maren Maren is offline
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Owen is currently in the process so I have no time line but this is what we are doing...

Step 1: DME first turned down rate from his 26 rate to 10. She also required us to watch his VTE and ensure that while he was on a rate of 10 (only when awake) he was tolerating it. That is the first change.

Since Owen's lungs were not mature at birth (struggled with keeping his CO2 level down) he went on the vent. He has no structural issues.

At the end of 2 weeks the Pulmo Dr wanted a Cap. blood gas done to see how his levels looked.

While Owen was on this change I went ahead and would prolong taking off the vent while changing him or even when we were doing trach care. I knew Owen could breath on his own and wanted him to remember this. I ALWAYS watched him and if he was not tolerating it then right back on. I also told my DME that tummy time was necessary and so I began to take him off for 1 min., then 2 min., and on to now 5-10 min. off. Again, watching him.

Step 2: Our DME got approval for and ordered an In-line CO2 monitor. This will help us know if Owen is successfully expelling his CO2 when we go to the next change of no rate during the day.

The goal is for Owen to be off the vent during the day for 2 or more hours by this summer. Our DME says is takes time and more then not the kids have the hardest time getting off of PEEP.

I can tell you we have had some set backs when we started weaning so expect them. I would have loved for us to have started and continued to roll with it. An ear infection set us back and so we started again once we could.

It seems to not come fast enough but I always thinks about when I can look back and say, "I'm glad we're here now."
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Maren- mom to Owen born 7/17/10: Born with Pierre Robin Sequence, 5-Q Deletion, significant hypotonia, trach 7/26/10, g-tube and nissen fondo 8/6 (fondo failed),vent patient. Making improvements daily! Also mom to Emma- big sister to Owen. Great helper and adores her little brother! Number 3 arrived and is a great addition. Will soon be big sister to Owen but that is ok!
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Old 03-02-2011, 06:02 AM
sadiebean sadiebean is offline
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This is so helpful. We too are hoping to start weaning this spring.

It sounds like you guys did not need to admit your kids to the PICU for monitoring before beginning the wean?

We pushed back on this requirement, only to relent because of the need to monitor CO2 - but it sounds like it's possible to monitor this at home?

We're switching Paul from CT to Boston anyway, so the new docs may not require this preliminary step, but it would be good to know what's common out there.

Thanks!
Ann
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Mom to Paul, 4 years old, vented due to central apnea, very severe Chiari II, sacral-level spina bifida, g-tube, autonomic dysregulation with significant temp dysregulation, hypertension. Beautiful, happy child. ** Off the vent during the day 3/13!
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Old 03-02-2011, 08:01 AM
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kadiera kadiera is offline
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We did not monitor CO2 at home (surprising, because CO2 was a big part of why Alexander has a trach).

We had really good blood gasses before we started weaning, and had maintained them through a bout of RSV just a couple months before. We had pretty regular visits to the pulm (every 2-3 months?) where they checked again, and as long as things were fine and there were no symptoms, they let us continue.
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Janet, crunchy pagan automotive engineer mom to Alexander, born at 27 weeks, 1 lb 7 oz | vent/trach/gtube @ 5 months for BPD | g-tube free 7/11, trach free 8/11. Also mom to Bethany born @ 28 weeks, 2 lbs | gtube @ 5 months | trach/vent @ 6 months for BPD, bronchomalacia, trach free July 2014!
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Old 03-02-2011, 02:12 PM
sadiebean sadiebean is offline
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Quote:
Originally Posted by kadiera View Post
We did not monitor CO2 at home (surprising, because CO2 was a big part of why Alexander has a trach).

We had really good blood gasses before we started weaning, and had maintained them through a bout of RSV just a couple months before. We had pretty regular visits to the pulm (every 2-3 months?) where they checked again, and as long as things were fine and there were no symptoms, they let us continue.
Does this mean you didn't have to go into the hospital for an overnight, just office visits?
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Mom to Paul, 4 years old, vented due to central apnea, very severe Chiari II, sacral-level spina bifida, g-tube, autonomic dysregulation with significant temp dysregulation, hypertension. Beautiful, happy child. ** Off the vent during the day 3/13!
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Old 03-02-2011, 02:17 PM
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kadiera kadiera is offline
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Quote:
Originally Posted by sadiebean View Post
Does this mean you didn't have to go into the hospital for an overnight, just office visits?
Correct.

Once we discharged from the NICU, we never stayed overnight for any vent setting change, or for weaning. We had one setting change that we ended up making them see us the next day because it wasn't going well. But other than that, it was all done as office visits and phone calls.

To some extent, I think the thing was that we had waited a looooong time for Alexander to be "ready" - I'm sure he was ready to try before then, and might even have succeeded (we'd failed 3 attempts at weaning before leaving the NICU; he'd been off the vent for months before he got his trach, and then we couldn't get him back off) but by the time we got to night weaning, his sats were better off the vent than on.
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Janet, crunchy pagan automotive engineer mom to Alexander, born at 27 weeks, 1 lb 7 oz | vent/trach/gtube @ 5 months for BPD | g-tube free 7/11, trach free 8/11. Also mom to Bethany born @ 28 weeks, 2 lbs | gtube @ 5 months | trach/vent @ 6 months for BPD, bronchomalacia, trach free July 2014!
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Old 03-08-2011, 01:51 PM
lovemy3 lovemy3 is offline
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My son was just trached 5 weeks ago and I am so overwhelmed by all of the steps in the process. Before/after surgery he has only needed CPAP support. Yesterday they gave him 1 hour off the vent and he did great. That's the plan for everyday this week.

I thought off the vent meant no tubes, just the little trach. See how new I am?!! So now I understand he was on a trach collar and that is the first step. Can someone explains what happens next? How do we get from that to just a trach with little piece over it (that I cannot remember the name!)

THANKS!!
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Old 03-08-2011, 02:11 PM
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kadiera kadiera is offline
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Quote:
Originally Posted by lovemy3 View Post
I thought off the vent meant no tubes, just the little trach. See how new I am?!! So now I understand he was on a trach collar and that is the first step. Can someone explains what happens next? How do we get from that to just a trach with little piece over it (that I cannot remember the name!)
It depends on the child and the doctors.

Our doctors said mist collar unless we were out of the house, but we had a hard time maintining sats on a mist collar; the HME (or trach nose) works really well for Alexander. Trach noses are generally a little dryer than the mist collar, so if your child is prone to mucous plugs, it might be beneficial to stay on the collar more.

After much discussion, we got rid of our mist machine, and just stuck with HMEs (and then a speaking valve, and now a cap)
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Janet, crunchy pagan automotive engineer mom to Alexander, born at 27 weeks, 1 lb 7 oz | vent/trach/gtube @ 5 months for BPD | g-tube free 7/11, trach free 8/11. Also mom to Bethany born @ 28 weeks, 2 lbs | gtube @ 5 months | trach/vent @ 6 months for BPD, bronchomalacia, trach free July 2014!
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