Are there any positive long term outcome stories from babies on ECMO?

[smta]

@ronaldcho Thank you for sharing your story and your kind words. His blood gases improved twice yesterday after ECMO was brought up because his pre and postductal numbers were under 95 on 100% oxygen then had a dip in his PaO2 from 280-something to 66 likely as a result of some of the drugs he’s on that are doing opposite functions. His oxygen is a little under 100% again but his CO2 is now lower than they would like when previously it was too high again bc so many of these drugs are doing opposite functions.

He had a normal head ultrasound a few days ago but I’m sure it will be repeated many times especially since he’s only 6 days old. I’m happy for your little one to be doing well despite their rough start in life - your story brings me hope.

 

[ronaldcho]

@smta PPHN, from what I understand, is very much a dance of overcorrection - @thenicudoc on Instagram does an awesome job of explaining his goal in pphn treatment. Your baby knows you’re there rooting for him. I am so sorry this is your reality and sending all the hope for you to receive support and strength.

 

[smta]

@ronaldcho I can definitely see that it’s a dance of overcorrection by everything that’s been modified as a result of his blood gas results. We’ve come down a bit currently on the oxygenation index due to some of the changes that have been made recently I think. Thank you for the Instagram recommendation too

 

[michaelburk]

@smta ECMO can work but as mentioned above in other comments , it depends on what for. If it is for pulmonary hypertension, then I can work. I have a link to a video by Dr. Tala talks about PPHN or persistent pulmonary hypertension in Newborn. It explains what is going on. My baby got diagnosed with pulmonary hypertension in the NICU and when I was having a complete meltdown the night nurse gave me this video. It helped me so much. Also, there are other medications that you can try like Bositan. I'll have to look up the names. But watch the video or search on YouTube for Tala talks or Dr Tala explains the NICU and PPHN.

 

[sknp1333]

@smta I also just had a baby (Feb 26th.!!) that tested positive and is in NICU. I know I am having a hard time personally, so please keep your head up. Congratulations on your little boy. And thanks for a group like this to give me some hope without all the judgment.

THANK YOU!!!!