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Old 09-03-2007, 12:59 PM - Thread Starter
 
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This rollercoaster has not been easy but I know it isnt on anyone. Lincoln had been doing really well on the vent, having several hours where he was at 21% O2 and consistently breathing over the vent. He then extubated himself so the drs decided to let him try CPAP, well he didnt last long on CPAP. I was so hoping he was strong enough to breathe on his own on CPAP. He did ok for 30 minutes, then the apnea spells started and after an hour he was back on the vent. I am getting discouraged, and feel he will never be able to breathe without the ventilator. How many attempts did your little ones need before completely giving up the vent. Pierce is finally off the oscillator and has been stable. I hate to get my hopes up because I know things change so fast. I kinda got excited L was on CPAP and it made me so upset when he was back on the vent.
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Old 09-03-2007, 02:26 PM
 
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Most micropreemies stay on the vent about 6-10wks so don't lose hope yet. our NICU always gives kiddos a shot to breathe on their own with CPAP even if it's just for a few minutes or hours. If they're extubated you might as well give it a shot. Dakota had a lot of set backs and ultimately did get a trach and stayed on the vent until 11mos old. At 35wks gestation she was still on settings of 24/7x50 so not really very low at all. Every NICU handles ventilation differently. Some NICUs do steroids if they think a baby is having trouble weaning off of the ventilator. Our NICU is extremely conservative about steroids and Dakota didn't get them until 35wks when she was clearly not going to wean off the ventilator on her own. There are a lot of things that your NICU can do from CPT to breathing treatments to steroids if they think the boys are having a really hard time weaning off the vent.
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Old 09-04-2007, 12:56 AM
 
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Erin was vent'ed for 7 weeks though it feels like a lot longer. She extubated herself too and her doctors decided to give her a shot. Luckily she didn't have a set back which forced us back onto the vent, but it took a long time to come off CPAP and had many set backs. Set backs are so difficult to deal with, it's totally normal to feel as you do.

keeping you guys in my thoughts, hoping that P stays off the oscillator.
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Old 09-04-2007, 11:35 AM
 
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Emery was intubated for 99 days before coming off the vent for good, and at that time NO one thought he was going to stay off. He was extubated 4 times (three failures) and one self-extubation that happened overnight and the resident didn't give him a trial of CPAP, though he was extubated successfully 2 days after that. He had 16 doses of surfactant (our NICU uses surfactant abundantly to help babies oxygenate better) and then he started receiving steroids, four courses in total. Once he needed steroids for pneumonia, but every time after that he came off the vent only to be put back on it (except for the last time). He was on 4 different ventilators, including the oscillator for over 6 weeks. His lowest setting on the oscillator was a MAP of 15. He averaged a MAP of 17 to 18 with a Hz of 2. I don't remember his conventional settings, though he wasn't on the conventional long before he was switched to the Jet. He then spent neary as long on CPAP as he did on the vent before getting to high flow nasal cannula. I swore he was never going to come off the vent and I asked them to trach him, but our NICU only traches as a very last resort, sometimes allowing babies to be intubated for 5 months or more. He has a blog littlemanbig-emery.blogspot.com, and there you will find a link to his hospital story (it's a carepage). I got a lot of hope from Emily's little girl Dakota because their respiratory situations were so close. Oh, and 21% O2 is awesome!! Emery is still requiring abougt 40% to 45% O2 at home.
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Old 09-04-2007, 01:47 PM
 
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Maggie was on the vent at the beginning. Loyola is big on weaning them early off the vent. They have a low diagonis of BPD because of it. She was taken off the vent on day 4 and put back on two hours later but they started immediatly as you can see.

On day 5, they did a heart scan and found her PDA so they knew she could have gotten off sooner if that wasnt there. After the PDA closed w two rounds of the meds she came off the vent. She was about 3 weeks old at that time. Then she got a staph infection and back on the vent for a few days. But then off for good. So it was about 4 weeks or so. But yes I remember the boys taken longer on the vent.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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Old 09-04-2007, 06:59 PM
 
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Hi Aimee, how are you doing today?
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Old 09-06-2007, 02:08 AM - Thread Starter
 
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Thanks Sarah for the info.I looked at your blog and Emery's carepage. What a cutie you have there! It gives me some hope. What is the difference between the conventional vent and the jet vent? Lincoln is oxygenating well. We got him on CPAP today after steroids, however all the drs,nurses, RT are saying he will be back on the vent shortly. I keep hoping that this is it and he can handle CPAP. Now Pierce well he has problems oxygenating, has been given 4 doses of surfactant, been on one round of steroids to get him off the oscillator the first time. His lungs are in bad shape and he is the one I worry wont wean of the ventilator.

Le Bec- I am feeling a little more hopeful today, however Pierce is having some other problems tonight that has my head spinning so fast and I really dont fully understand whats going on with him or what everything means. I will have to get the neos to explain it to me tomorrow until i get it
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Old 09-06-2007, 07:08 PM
 
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Quote:
Originally Posted by Aimes View Post
Thanks Sarah for the info.I looked at your blog and Emery's carepage. What a cutie you have there! It gives me some hope. What is the difference between the conventional vent and the jet vent? Lincoln is oxygenating well. We got him on CPAP today after steroids, however all the drs,nurses, RT are saying he will be back on the vent shortly. I keep hoping that this is it and he can handle CPAP. Now Pierce well he has problems oxygenating, has been given 4 doses of surfactant, been on one round of steroids to get him off the oscillator the first time. His lungs are in bad shape and he is the one I worry wont wean of the ventilator.

Le Bec- I am feeling a little more hopeful today, however Pierce is having some other problems tonight that has my head spinning so fast and I really dont fully understand whats going on with him or what everything means. I will have to get the neos to explain it to me tomorrow until i get it
The Jet is high-frequency ventilation, and even an oscillator, but more gentle than the oscillator - plus, the babies aren't clamped to the bed on the Jet. They are far more mobile.

Remember, though, if he doesn't wean off the vent it's not the end of the world. Kiddos can stay on the vent for years even and then wean over time. It's hard to stay hopeful when you're in the thick of things. I don't think I really thought things were getting better until we were on the ride home. Hang in there.
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Old 09-07-2007, 11:02 AM - Thread Starter
 
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Originally Posted by sarah1972 View Post
The Jet is high-frequency ventilation, and even an oscillator, but more gentle than the oscillator - plus, the babies aren't clamped to the bed on the Jet. They are far more mobile.

Remember, though, if he doesn't wean off the vent it's not the end of the world. Kiddos can stay on the vent for years even and then wean over time. It's hard to stay hopeful when you're in the thick of things. I don't think I really thought things were getting better until we were on the ride home. Hang in there.
Thanks Sarah! He did go back on the vent after 7 hours on CPAP and i just cried. I want him to be able to breathe so bad, and Pierce is no where near it and drs think he will be back on the oscillator soon, and I HATE that thing.
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Old 09-08-2007, 05:29 AM
 
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Hi Aimee - I'm from your due date club and just wanted to say that your boys are still always in my prayers. After just one night with Isabella in the NICU and one night in Special Care (the night we had to leave her there) I have a whole new level of sympathy for you, sweetie. Hugs for you - you are one very strong momma.
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