Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Ventilator dependent - need some hope!

Hokari
0 Recommendations

My son (28 weeker, 770 gr) will be 12 weeks tomorrow. He is still on the ventilator. When he was 6 weeks he received a course of Dexamethasone with this he managed 5 days on the CPAP, but then he got too tired and had to get back to the ventilator. After this the new plan for him was to let him grow and then try again.

So now he is 2,3kg and last Monday they put him on CPAP. His oxygen level was around 32%, his pressure 9. Unfortunately he made is only 5 days again and today he was put on the ventilator again.

I am so depressed ! I am afraid that he will never be able to come off the vent...

Are they any other parents out there with similar experiences whose babies who stayed a long time on the vent and made it in the end and are doing fine now? How long did your babies stay on the ventilator?

Anyone can give me some hope?

Explore topics in this discussion:

Asthma Bronchopulmonary dysplasia Surgery Sildenafil Dexamethasone CPAP Viagra Hypertension Hernia Pain Pulmonary hypertension Esophageal atresia

37 replies

preemieboy

My son was 1lb 6 oz and in the hospital for seven months this was 24 years ago! He is 25 now. Every time they tried to wean him off of the vent he would crash. They finally gave him a lot of steroids and inserted a larger tube. After three days he came off and was off for the next 20 years. He is now back ventilator dependant because of ards. He is my only living child, and he is a joy to be around. He plays guitar and rides a fourwheeler. Just don't worry too much about how long it takes to wean your baby and don't forget to be amazed

happybunny202

Hello! I just wanted to say that my son (very long story short: surviving twin born @ 28 weeks, 85 days in NICU) and I just went to the 3rd birthday party of one of his "roommates."

PJ was a 24 weeker, born in Sept. of 06, whom doctors made dire predictions about... He was in the NICU 'til Janaury of 07, then in the step down nursery 'til late March, with a return to the hospital for a PICU stint in June.

Well, while he still receives PT/OT, this boy whom doctors said would never talk, walk, or see does all three. He has vision issues, but they haven't stopped him. He was dancing and partying with the best of 'em, a normal three year old on a sugar high, LOL.

OK, that was a long story, and not mine to tell, really-- but I wanted to share. His Mom endured a lot of fear and heartache, too, and a l o n g wait to get her son home, but...

Hang in there! :)

Miracle24

Have faith it will get better. I know how you are feeling right now. Because a year ago my daughter Ariana Destiny was born at 29 weeks and had to stay in the hospital for 171 days. She was on the vent for almost 6 months. It was days when she would get off the vent after taking the steriods and then go back on the vent. At one point they wanted to give her a trach and a G-Tube. I was against that my daughter showed me what a miracle means. She die three times and came back. Faith is what got me through it. Trust me it gets better one day. If you need to talk email me at rrdm782003@ yahoo.com

Riheemjrmommie

Your not alone .... My son was a 27weeker and I went through that with my son also. He was on and off the vent 3 tymes and everyone said the CLD is the reason why it was taking him so long to get off but the third tyme was a charm. I call him my 3 tyme baby. The first tyme he was off for about 12 hours then the 2nd tyme it was 3 days and the third tyme he stayed off. Just think positive . Our babies let us know when their ready and I had to learn that cause I kept seeing other babies off the vent and he looked so helpless. But keep your head up and I'll keep your family in my prayers. My son is still in the hospital and hopefully after his gtube surgery and everything he will be coming home soon. He's 4 months actual (1.5 months adjusted). Was he diagnosed with CLD?
Have any questions you can email me at nayriahsmommie@aol.com. We are here for you if you need anything

NICUNiece

Yes, her PDA was closed shortly after birth with meds. Fortunately, everything else seems pretty good -- it is just her weak immature lungs. She fights the vent a lot too so she gets sedated. Time, time, time. I guess we just have to keep waiting and praying.

Good luck with your boy.

Helen

Hokari

@NICU niece: I hate it when they call the babies "very sick". We know they are not healthy, otherwise they wouldn't be in the NICU, but I don't want it stressed so much. They did this so often with my son. Argh.

I can really understand your frustration. For me it also seems like all the babies have no problems breathing only my son. There are the tiniest babies, 24 weekers, who are on CPAP with 21% oxygen... it's amazing. I'm very happy for these little ones, but of course I wish this for my son too.

You must keep fighting!!! Maybe the Dexa will work this time. I will keep my fingers crossed! Is her PDA closed? But I guess the docs checked this right after birth.

Good luck!!! keep us posted!!!

NICUNiece

My niece was born at 29 weeks, (in a broken sack for maybe 3 weeks!), but weighed 1276g, which I think is pretty big for that gestation. She is now up to 2325g (5.125 lbs) and is over 8 weeks old. The first dose of dexa did nothing. She has been on the second, stronger, dose for over a week now, and it seems to slowly be doing something, but they haven't started the tapering off process. She is still referred to as "very sick." I keep reading about babies who were on a vent for a week or two, so it is frustrating to still have her on one after 2 months, with no end in sight. She has been on an oscillating vent almost all this time too. When she "moved up" to a conventional vent, she had to go back to the HFOV after a day or so. It is reassuring to read about other babies who spent many many weeks on a vent and eventually got off (thank you for sharing), but then I also feel terrible that those families had to go through such a scary and seemingly endless time. I wouldn't wish this on anyone!

Thanks for asking about our little one. I am amazed at, and grateful for, those of you who come back to share your stories, when I can imagine just wanting to forget the whole NICU experience.

Hokari - I am so sorry to hear about your son's setbacks with the swine flu - how terrible! As if you didn't have enough to worry about already. Hang in there.

Helen

Lyndseylou

Hello
My little 28 weeker with CLD was on a ventilator for 13 weeks. I know your pain. We went thru 3 rounds of steroids with no firm results. We ended up transferring to Children's Hospital of Phila for Nitric Oxide treatments. They pumped this into her ventilator. It worked and with in 72 hrs she was off of 100% support from the vent and on a Nasal Canella. It took some time (she has some other issues as well,) but she is home and down to 1/2 lts support on a nasal canella.
.

Hokari

My son is off the vent for quite some time now - thanks God - but still on CPAP with about 30% oxygen. He is already 5 months now and not even close to coming home soon. It's very frustrating, but we are hanging in there, we will keep fighting until the day we can finally take him home.

He was now diagnosed with pulmonary hypertension and will start on viagra (Sildenafil) tomorrow. I heard this drug doesn't help too often... so we will see!

@nicuniece: did your niece get dexamethasone yet? This drug actually helps a lot of babies to get off the vent! What is her weight? Somethimes more weight also helps with the breathing.

Jen_G

I am so happy for you.

I was going to suggest asking the doctors about nitric oxide or a high frequency ventilator.

Remember, time is what your baby's lungs need and keeping away from infections!

NICUNiece

How is your son doing? I hope well.

I have been following your posts since my niece is also struggling to get off the vent. It has been over 8 weeks and she doesn't seem to be close.

ronica

I am so happy for you. And I'm keeping my fingers and toes crossed too.

Hokari

Thanks for asking!

After receiving his second round of Dexa my son has now been on CPAP for exactly 2 weeks. He is doing great! We are so happy and grateful! As long as he doesn't get an infection, the docs are positive he won't have to go back on the ventilator. His settings aren't too bad, his oxygen is 24%, pressure is 7.

He is doing so much better now. Crying, being active... he just wants to live. We'll keep our fingers crossed! After 13 weeks of being on the vent, it is just so great to see the tube gone!!!

aznshorti

How is your son doing? Is he still on CPAP?

fiaryangel24

My Baby girl! is 24wk 1lb 4oz 8/29/08 and she at home know on a Vent. she Have a LTV 150 Vent. so. The Dr. give 30% change Look at her Know! 20LBS 70Z

Hokari

My son now received his second round of steroids. He will be taken off the ventilator today. We hope for the best... I'm not happy about the steroids, what choice did we have, he needs to come off the vent, it has been too long already.

@Debra, after your daughter came off the vent, how long did she stay on CPAP?

I just want to take my son home, he is in the hospital for 96 days now. But first he needs to learn how to breathe, then to swallow and breathe at the same time, then his hernia operation... I guess I must be patient! :(

MichaelasMom

Hi Hokari,

My daughter was born at 23 weeks, 6 days and was on a vent for more than 100 days and there were many days that I thought we would never get her off. In her case she struggled and her lungs were very weak after a nasty CMV infection. The steriods helped to get her onto CPAP - but only the second time round.

Eventually she did come off onto CPAP and then from there quickly onto oxygen. Keep the faith and hang in there. Just be prepared to take your baby home on oxygen as babies who've been on a vent need some extra help with their lungs. I'd insist on taking your baby home on oxygen when the time comes as babies who are on oxygen for the first year after a rough start with their lungs do better in the long term.

I will be praying for Mattis and for you.

All the best,
Debra

itu

yes, you are not alone my aby girl was a 25 weeker, she was on vent for a about a month if not longer, then they thougt she was getting better, so she was put on c-pap, and sipap, for about 3 wks, but the she sarted needing for oxygen cos she develpoed pulmonary hypertension due to P.D.A that she had, ther was even a time that she was on ossccilator on 100% o2. then her lungs started to heal slowly, and on mothers day, may 09 my angel extubated herself. she was back to c-pap, bt this time only for five days and she was on high flow since then. she started off wt 6 liters 02, in may she is down to 3/2 today july 13, however while on vent she was on nitric-oxide and it really work for her. she even got nitric-oxide on this high flow. finaly nitric would be cut off completly tomorrow 7/13/09 and they hope to continue to wean her off the oxygen, since she is only requiring minimal o2, just about 28 to 30% now. so my dear hang in there and put your faith in the lord. when you ask God for assistance, he will never let you down, i am telling you, my baby is a testimony, though still in nicu, my God has really answer my prayer because of my faith in him. sometimes we have to take time to pray real well, ask God for forgiveness, lend an helping hand to needy, surely God will answer our prayer. i will remember your beloved in my prayers. take care and remain blessed. my baby was 1Ibs 6 ounces, today she is almost 10Ibs, so don't loose hope.

Hokari

My son received the dexa for one week. They said the last 3 days of this period was weaning down. I don't know the dosis, the docs just said it was the low dosis.

My son will receive another course of dexa next week as it looks.

Good luck with your daughter!!!

sksmaw

Do you remember the steriod dose your son had we are trying a dosage with my daughter before we go to the decodrone

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You