Terrified and looking for hope
I am writing this from the NICU and I am absolutely terrified. I am hoping someone here has been through a similar situation and can offer some hope or share their experience.
My baby is a preemie who originally spent 150+ days in the NICU. We finally got to bring him home on just 0.25L of oxygen, and he was maintaining beautifully.
But the very next day at home, he started crying, and his oxygen requirement just kept increasing. We rushed him back to the NICU. They initially put him on high flow at 6L, but he was still struggling to breathe, so the doctors had to intubate him and put him on a ventilator.
He has now been on 100% FiO2 support for the past week, and they are completely unable to taper it. He is barely maintaining his saturations on the borderline. After 3 days on the vent, they discovered he has a Klebsiella pneumoniaeinfection. They started him on Colistin, but it has been 4 days on the antibiotics and he is still not able to maintain his SpO2, even though he is heavily sedated.
To make things more complicated, he also has severe Pulmonary Hypertension (PH). It is currently in control with his daily medicines, but his lungs are so reactive right now that as soon as he moves or becomes even slightly active, his SpO2 plummets down into the 40s and 50s.
The absolute scariest moment happened a few days ago: the stress became too much, he lost cardiac activity, and they had to perform CPR to bring him back.
I am so scared right now. Has anyone had a similar experience with their child needing to stay on a ventilator for several days at 100% just to treat a severe infection? Did the antibiotics eventually kick in? I just need to know if babies can come back from being this sick. Any honest experiences or advice would mean the world to me right now.