And he smiled at me when he finished.
An ex 25 weeker who came home with an NG tube, he's now 7.5 months corrected. We are not even actively weaning him but his intake has been improving slowly.
I know it will fluctuate and he's not losing the tube yet, but we are absolutely over the moon.
My ex 25 weeker with moderate BPD/CLD, now 7 months corrected, is officially breathing room air today.
The end of 308 days' of respiratory support.
We still have our challenges, he has an NG tube which doesn't seem to be going away soon. But hey we got to celebrate this!
And no, we didn't actually light up the prongs. We are returning them to the oxygen provider:)
Quick update to my previous post...I did not expect to post two venting posts on the same day.
Background: 25 weeker with moderate BPD. Discharged at two months corrected with oxygen at 0.05 litre (50ml), around five months ago.
There was some confusion around his latest sleep study. The community nurse who acts as messenger between us and the doctors told me that even though my baby was on 0.01litre (10ml), they can't just turn off the oxygen and he needs to be weaned further at 0.002 litre (2ml) increment. I told her this sounds absurd.
Finally I received a call from his consultant and we worked it out. In their system, instead of 0.05 litre it says 0.5 litre at discharge. The flow meter we have at home don't even go above 0.1. For five months no one spotted it. It's funny because I swear when the nurses called me to inform me what to do re his oxygen, they either told me the correct number, or auto corrected to the correct decimal place when I said surely you meant 0.0x not 0.x. Yet in their own internal communication, it has always been 0.x. (I'm an accountant, I'm pretty sensitive to decimal places...). They would probably wean down the oxygen a lot sooner if the right number is there.
I'm beyond mad. Sure it probably didn't cause any significant harm to my LO but it is highly likely that he should have been off oxygen sooner. We could have lived a slightly easier life for a few weeks if not months. Essentially oxygen is a medication in this case and the wrong dose has been prescribed for five months. All the time he rubbed his stickers and pulled his prongs out because of the physical discomfort. This could have ended sooner.
It could have been worse if it's the other way around. If they believe a baby discharged at 0.5 litre was at 0.05 and just wean them off very quickly.
And it still doesn't mean we can turn off the oxygen tonight. There is a weeks long process where the baby is off oxygen one hour the first day, two hours second day etc to be completely off to room air. They need to discuss in this case if the weaning can be quicker as he has been on 0.01litre (not 0.1 litre as shown in their system) for weeks. Still it means a few more weeks of dealing with oxygen for us ...
I will make a complaint when I calm down... right now I'm just still in shock.
Warning: this is 100% pure rant...
Summary: baby has been on 10ml/min (0.01l) oxygen after five months home. Now it is possible that his medical team will wean him off by 2ml/min (0.002l) increment rather than removing the oxygen.
Edit: they got the unit wrong. they thought my baby was discharged at 0.5l instead of 0.05l. we have been subject to a long and slow weaning process. because of a typo somewhere.
Ex 25 weeker, home on oxygen and with an NG tube.
We went home with 50ml/min oxygen. He's now 6.5 months corrected. We are in the UK and things work quite differently here. We don't have direct contact with the doctors, communication re oxygen weaning is via community nurses. Usually a sleep study will be done overnight at home. Doctors will inform the nurses whether to wean the oxygen and then the nurses will inform us. Sometimes this happens the next day, sometimes it could take up to two weeks to hear back.
After almost five months home, my LO has been on 10ml/min for the last few weeks. I always thought that was the lowest setting before room air. As you can imagine I was really looking forward to life without the oxygen cylinders.
A sleep study was done last week. I got the call next day saying the doctors are happy to reduce the oxygen from 20ml to 10ml/min.
Me: Great results. But he's already on 10ml/min. This means we can turn off the oxygen right???
Nurse: Eh no. We would need to order another flow metre and further weaning would be to reduce 2ml/min following each good sleep study.
Me: No one has ever told us before. He's a already a big baby and 10 ml/min (0.01l) oxygen is already minimal. This sounds absurd?
At this point the nurse wisely deferred to the consultant and says she will ask them to call me.
I was so disappointed. I was really looking forward to not seeing prongs in his nose (and he pulls them out all the time and I have to put it back every five minutes). I just didn't see this coming. It has been another few days now and we still haven't heard back...
We will do whatever is best for our child and follow the medical advice but the uncertainty is really killing me...
Sorry just need a bit of ranting...