What was your home o2 road like? Ever have to increase?
DS2 came home at 4mo actual 1 month adjusted on .25 liters of continuous O2 in Dec. He was diagnosed with Pulmonary Vein Stenosis and pulmonary hypertension shortly after coming home. Our pulmo let the cardiologist take the lead because of the underlying heart condition. We increased his O2 to .75 liters at the end of March.
2 weeks later he had a heart catheter and angioplasty done to treat the stenosis and hypertension. We went to NOLA to have it done by a specialist in PVS. He commented multiple times after the cath about how bad his lungs looked, presumably from BPD.
Last week we went in to have an outpatient endoscope done because of GI issues. While in recovery he was requiring 2 liters of O2 and we ended up being admitted for three days. He was happy as could be and we were finally discharged on 1.5 liters of o2 and a home pulse ox. He is still sating mid 90's and the pulmo is very concerned.
He is now 9mo actual 6 mo adjusted and 15 lbs. the cardiologist is happy from his standpoint that the hypertension is much lower. The pulmno said he has never had a patient with PVS and he plans to come an expert before our appt next week. He is talking about doing a lung biopsy to test for ILD.
Sorry this got so long. It's been so overwhelming and the cardiologist and pulmonologist both looked at me last week and said "I don't know what to do or what to expect with him."