Chronic Lung Disease and still on vent @ 5 weeks old

[BrittLeblanc]

Hello everyone. Riley was born on May 2nd at 25 weeks 2 days 1lbs 9oz and is now 5 weeks at 2lbs 6oz. Since then he was on the vent that blows small puffs in his lungs. Then he needed more support so they put him on a more conventional vent. Since 3 weeks ago they have had Riley on this vent but have been able to wean down the rate and pressures. They also found that due to the vent Riley has chronic lung disease. He has been having destats for about 2 weeks so they decided to put him on steroids as of Friday. Early this morning they tried to put him on CPAP but he did not respond well to that at all. they have put him back on the vent with a larger breathing tube(he out grew the one he was on) and found the settings that he likes and also gave him a breathing treatment which has seemed to help. So now the plan is to keep him on the vent until steroids are done and continue to wean the vent. Has anyone else had something similar to this happen?

 

[Laura2919]

He will do it at his own pace hun! You will see. Jaycee took a setback when she wasnt digesting her milk! They had to asperate (sp) her tummy every hr and she didnt digest it for 3 days so they had to take her off the milk completely. This was a setback for me and I was upset but then she started to digest it and then got better and better.
I hope he starts to wean off of the machine soon but he will one day, at his pace. Babies born early have to fight so much sometimes its just too much fighting and they are tired. He will get stronger..

 

[BrittLeblanc]

Thank you!

 

[TwoBumps]

I agree with Laura hun, they all do it in their own time & at their own pace! Both my boys started on CPAP but were determined little buggers & kept pulling it off & so were both ventilated for 5 days. When they came off the ventilator they needed low flow oxygen but did not have to go back on to CPAP. Another little boy who was in NICU with the boys was on CPAP, then ventilated, then CPAP, then ventilated & finally back on to CPAP for a few weeks before going onto low flow oxygen. I still see this little boy all the time & he is doing brilliantly!

I was told that one on my twins had chronic lung disease as he was still on oxygen after 37 weeks gestation, my other twin however did not have it as he came off the oxygen at about 36 weeks gestation! However Joshua has had no problems with his lungs since he came home & I understand that he has probably grown out of the CLD already

Riley sounds like a little fighter & I'm sure that he will do it as soon as he is ready!! x

 

[lizziedripping]

Hi hun. We had exactly this situation with our daughter who was born at 24wks 5 yrs ago. She was ventilated for 6wks, and only came off after 5days of steroids. The steroids were the only way she could get off the vent. I hated it because it was a necessary evil in that it kept her alive, but left her with CLD. The good news is that once she did come off onto CPAP, she never looked back, and is now a healthy 5yr old.

The steroids should do the trick for your baby, have they said how long he'll be on them? Evie fortunately only needed a short course of steroids - they work wonders hun in the right circumstances. Evie did have to come home on minimal oxygen, but was weaned from it after 3 months, and has never so much as had a chest infection in the last 5 yrs.

If you need any more advice get in touch - I have been there, and can help at what is a stressful time for you x

 

[BrittLeblanc]

Well they told the steroids will be a course of 9 to 12 days. As of Wednesday at 2 Riley has not had one destat So they believe the magic of the steroids has kicked in but they are letting him rest for a few more days before they try him on CPAP again because they want this try to be successful. They dont want to rush.