Veno Lymphatic Malformation
My baby girl is 8 weeks old. We have had such a rough time, at 2 weeks old a large mass appeared on her neck and almost completely shut off her airway. She has VenoLymphatic Malformation. She was in PICU on a vent for 5 days. They drained the site and did schlerotherapy. We were pleased a couple of days ago to hear that the place that caused the problem is completely dead, however there are two smaller areas that need attended to.
The area that she has this malformation is in a bad place which could compromise her breathing if it happens again. The radiologist basically tells us this could be life long, but the ENT seems confident once this is handled it shoudnt' come back? but I am confused....can this just be fixed with surgery?
Can she live a normal life? Luckily we avoided a trach and I am so so thankful for that. The only thing allowing us to sleep is a pulse ox monitor we have from the hospital.
I just need some support, I am seriously about to lose it. If I haven't already. I just don't know what to do! I feel the hospital has done a great job but no one really has answers. The ENT said she is part of a case study that will be published.
Any advice or positive feedback would be wonderful at this point.