We’re posting a little late today – it’s been a busy day, but all in good ways. This 75 degree weather is wonderful!
After what felt like the longest slide backward this winter, Owen’s Pulmonary doctor has given orders to reduce the amount his diuretic he is given by 25%. This is the first step since January that is working towards reducing from his baseline Oxygen support. We still have a long way until Owen’s warning to Nasal Cannulas can come true; he has to completely come off the diuretics before she will start weaning his oxygen from his current 1/8 liters per minute. Then he will have to go to 1/16 and, maybe 1/32 before he’s off. If all goes really, really well it will probably be a few months. That timing puts us right back to cold and flu season and if he has another winter like last then we could be looking at much longer so I don’t want to get too excited, but it is a nice sigh of relief to be making progress from the baseline he was last at six months ago.
What do diuretics have to do with an oxygen wean? Children with Bronchopulmonary Displacia (BPD), the form of Chronic Lung Disease that plagues preemies, often struggle with edema, or water retention. That excess fluid can get into the lungs making the lungs not distribute oxygen as well and can also create blockages that make breathing more work . Diuretics help rid the body of excess fluids so it doesn’t collect in his lungs. Because he’s been on diuretics his entire life, Owen’s body has become dependent on them so he will need to wean slowly, versus just stop in one fell swoop. Before this new order from the doctor, Owen’s been on the same daily dose of diuretics as when he left the NICU and he’s nearly doubled his weight, so in reality he’s been weaning just by growing but this is the first active reduction is dose.
I have evidence that Owen still needs his diuretics, I recently woke up in the morning to find the full diuretic syringe next to his bed – I had mistakenly missed giving it to him the night before. Just missing that one dose impacted his day. He required a neb, which he hasn’t been requiring lately, and I could see mild edema when I changed his diaper. I’m not sure many others would have noted the mild differences, but if it’s noticeable to me after missing one dose, I know that his body is still depending on the diuretics to help his breathing.
If you want a fuller description of BPD, here is my favorite explanation in lay terms.