Ventilator question

[Sam182]

Hi,

Alexander is now on day 11 of NICU and twice they have tried to move him onto CPAP but both times he has had to be reintubated as he is just not coping. I'm really worried as they tell me he likes being on his ventilator too much. How will they ever wean him? It's breaking my heart because I feel like we just can't move forward. Does anyone have experience of this?

 

[EmSmith1980]

I know it's hard but try not to worry too much. My daughter took 5 attempts to come of the ventilator. Finally after 5 and a half weeks, she moved onto BiPAP which gives more help than CPAP and less help than the vent. We thought it would never happen, but she all of a sudden just turned a corner, once she'd grown a bit, and done it. xx

 

[Sam182]

Thank you so much. Such a relief to hear that

 

[EmSmith1980]

Every baby is totally different, and your wee boy will just do everything in his own time. xx

 

[sherryberry79]

Hi,

My little girl got stuck on the vent, she was born on Aug 3rd 2009 it must have been about 5 weeks after this that she was taken off the vent and put onto bipap. She managed off the vent for 8 days, but then they had to intubate her again because she just got too tired. I was beside myself and honestly thought she might never get off the machine. On Oct 14th she was transferred to Alder Hay to have a PDA ligation and four days later they extubated once again, this time for good. She went from strength to strenghth and never looked back! I am sure your little fella will get there soon x

 

[Foogirl]

I have no experience as Abby was barely ventilated at all. I just wondered which hospital you were at?

We have a couple of Bliss support groups near Glasgow if you are interested. There is one at Wishaw and I run one at Larbert. It is a really informal get together of mums who have been through what you are going through. If you are interested, drop me a PM.

 

[Sam182]

I have no experience as Abby was barely ventilated at all. I just wondered which hospital you were at?

We have a couple of Bliss support groups near Glasgow if you are interested. There is one at Wishaw and I run one at Larbert. It is a really informal get together of mums who have been through what you are going through. If you are interested, drop me a PM.

Thanks I've joined the bliss support forum too. I'm out paisley way

 

[Foogirl]

Ooh, I think we have a group in Paisley too. I'll check.

 

[Bubble2011]

My son was seven weeks early in August. When he was on the ventilator the neonatal nurses warned me that it might take more than one attempt together him off the ventilator. I was told to try not to worry (easier said than done!), if he didn't respond well to the removal of the ventilator they'd just put him back on it and try again in 48/72 hours.

Premature babies get very tired in their first few weeks and their lungs are working really hard. Your little one will come off the ventilator when he's ready.

What I found with our little guy is that he seemed to not get better or worse for a bit, but then when he did get better it was a quick turnaround.

Your little one will get there in his own time

 

[vermeil]

Hello and welcome! I know it`s very very hard but unfortunately these little guys just need time to grow and gather their strength. My own guy was on high frequency ventilation for weeks. Then to cpap, then back to ventilation (intubated), etc. He went back and forth for months. It`s a long road but every week it gets a little bit easier. One day you`ll hear the word `release`appear in conversations and you`ll wonder gosh where did all those weeks, months went, of being terrified half to death, of being stressed constantly! You`ll waltz into the nicu with a big smile, knowing your little one will be home in a matter of weeks. I know it seems impossibly far now but looking back my son`s 105 days in nicu just flew by. And that was just last year!

*hugs*

 

[Poorah]

Martha gave up the ventilator after three attempts. As others have said, the lungs just aren't meant to be working right now and it is very tiring for them. He will get stronger and it will get easier and in the meantime it's often a case of the unit pushing him a little to see if he can handle it. If he can't, the ventilator makes his life easier until he can get himself to a place where he can handle it by himself.
As for the comments about him liking the ventilator too much, don't take it to heart. The medical staff always make comments and sometimes you get the joke and have a laugh, and sometimes you're just too exhausted and take it to heart. He is going to drop the ventilator, he just needs a little more time. And when he does, you will cry like a baby as you know how far he has had to come to achieve it and your heart will ache with joy.

 

[AUGmum]

It took my lil one 3 attempts and 5 weeks to get off the ventilator. I can assure you that your lil one is a step closer to getting off everyday. These preemies take their time.

 

[Sam182]

Well they tried him again and he's been off for 2 full days and has had no de-sats! So proud of him

 

[EmSmith1980]

Aww well done Alexander. xx

 

[bumpsmum]

Aww well done Alexander that's great to hear. Sam I have a feeling our babies are in the same room together I've heard his wee name mentioned are u RAH? My wee Daniel arrived on thur and is ventilated as well he is the first baby on the left when u go into high dependency.

Very small world if it is the same room lol xx

 

[Sam182]

Yeah I think we are in the same room! Alexander's at the very back on the left and I'm the one looking exhausted sitting next to him for hours a day! What a small world!