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Ventilator Kids For parents and caregivers of children on ventilators.

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Old 03-28-2011, 09:28 PM
christie christie is offline
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Default Weening off vent

I just have a question for you that have more experience with the vent...our son began having seizures about 5mnths old(Infantile Spasms to be exact). Well we couldn't control the seizures so of course they caused all kinds of heath issues..developmental arrest the delay, he is now gtube fed, had to be trached and placed on the vent. At first they didn't think he would need the vent just the trach..well I guess he though different....so here we are 1 1/2 years later still on the vent...so I guess my question is have ya'll experienced when you try the weening you can get so far and then boom right back on the vent. We have tried 3 different times to ween we can get about 3 weeks in and then he got pneumonia the first time..second time was having increased sleep apnea...this 3rd time we went in for a check up off for 3 weeks and his xrays showed severe atelectasis. Of course at that time his MRSA was positive and he tested positive for psuedamonis (this was the first time for that). Sorry such a long post...but I was just curious if anyone else has had or is having trouble weening off the vent?

Thanks,
Christie
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Old 03-28-2011, 09:36 PM
Johblues Johblues is offline
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We aren't very far into the weaning process, but here is what we are doing...

We had a lot of trouble weening Amirah off the vent while we were still in the hospital. We found that going to fast would cause her some pretty big back steps.

Since we have been home from the NICU (since October) we didn't do any active vent weaning all winter. In the middle of January we lowered her BR and then in March we lowered her pressure support and started trach collar trials. We discussed this with her pulmonologist and we have decided to go very slowly. For the 1st two weeks we are only doing 2 hours off the vent at day, then for the next 2 weeks we will do 2 hours in the am and 2 hours in the pm...etc etc etc. We were told not to the trach collar when she is sleeping or when she is eating (she only eats via her g-tube) for the beginning.

It's only been 10 days since we started the trach collar trials but so far so good. When we were in NICU after the 3rd or 4th day she would have a big set back, so for us the slow and steady approach has been working.
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Amirah's Blog http://amirahnation.blogspot.com/
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  #3  
Old 03-29-2011, 08:43 AM
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kadiera kadiera is offline
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Every time we've taken a major step, we've had a setback. We've been somewhat cautious about things from that perspective.

Maybe he still needs the vent? Maybe he needs more time to adjust to each change?

I know we did the majority of our weaning in the summer, rather than during cold & flu season...
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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 03-29-2011, 01:55 PM
christie christie is offline
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Yes, our weans have been in nice weather months for the most part. The dr seems to think he just isn't getting enough air into his lungs. We are waiting on a bigger trach..currently have a 3.5 pedi bivonia. Going to a 4.0. I have been just feeling lately that maybe we are doing something wrong and causing him not be able to wean off.....you know just how all these crazy thoughts go through your head....am I pushing too hard not hard enough....
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Old 04-04-2011, 02:15 PM
emily emily is offline
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We started with full vent at 4 weeks old and are down to just the vent while my son is sleeping. We did it very slowly. We strated by going down in breath rate by 2 breaths every two weeks just during the day, then when we were down to 6 or 8 we moved to reducing the pressure control (we are on pressure and not volume) 2 every two weeks until it was down to aroun 8 or 10 maybe and then took off the breath rate all together. Then when that was good we started weaning the pressure support down by 2 every 2 weeks. So as you can see this is really really slow. We had some sickness and just stopped where we were. Sometimes turning the settings up during sickness but going back to where we stopped after and for a couple of weeks till all was stable. We weaned less in the winter and more in the summer and warmer months. Once his pressure support was down to 4 we triled him off the vent for 1 hour a day, then 2 weeks later 2 hours a day in 2 1-hour sections, then 3 hours a day and then 4, 6 and 8 in split into two times per day and then at that point we went to all day. He increased his day time oxygen needs but the pulmonologist was okay with that and said it was to be expected.

We got a sleep study before we did anthing at night and found that he was not blowing off his CO2 and so we actually turned up the night vent settings but kept the daytime with no vent. This is where we are now. He is doing better during the day and is down to no oxgyen. At night he does have manadtory oxygen. Oh he has not been a large oxygen baby. He didn't need any till his first big sickness at 9 months. And since the night settings went up with the oxygen too he has needed less suctioning overall (more when having a cold though still).

Okay so that was a lot but I hope it helps. Oh, I do know another mom with a Moebius Syndrome trach, vent baby form a diferent state who did things very similarly.
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Old 04-04-2011, 02:36 PM
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Kamilah's Mommy Kamilah's Mommy is offline
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How do you know your child is even ready to start weaning them off the vent?
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ROSA, mom to Kamilah; born on Dec 18 2008. Craniosynostosis
Nissen & G-tube: Feb 13 2009
Trach: Apr 09 2009
Shunt: Jan 21 2010
Giant Cell Granuloma of the mandible: July 30 2010, (it grew back )
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  #7  
Old 04-04-2011, 07:44 PM
christie christie is offline
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Well it wasn't in the original plan for Joshua to even need the vent. It was a surprise to the dr when he didn't do well off the vent after the trach surgery. We have gotten off the vent during the day and has been off since last summer...but we just can't get off at nite. He had alot of atelectosis(sp) last visit so the dr wanted to go back on the vent at nite and increase trach size from 35. to 4.0......he breaths so shallow he just isn't getting enough air into his lungs...he is on cpap and a peep of 6 pressure support 14..has only required o2 if sick. So, we are just hoping after the RSV season then maybe we can tray again not sure waiting to go back to the dr April 26th.
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