I hadn't even realized it's been a week with no update, Eek. Things have been a bit confusing from a medical standpoint so I'm going to try to speak in layman terms. Avery has been here for a week and I can't really say that we have accomplished a ton except his lungs are less wet. Which means he is better from a respiratory standpoint. It's all about the balance of his lungs vs. his kidneys. He has been requiring up to two to three doses of IV lasix (takes the excess fluids off his body) a day. Without the lasix he is not producing any urine at all, therefore his weight is increased in the am up to three pounds from the evening. This has to be watched closely because we know that any excess weight or fluid he has goes directly into his lungs. So we have been spending the week playing with his fluids as well as the lasix. Currently, his kidneys think he is dehydrated so any fluids he he takes in them store them but the rest he third spaces (leak) into his lungs. Surprisingly, he is very happy (even lost another tooth, poor kid is all gums) and he doesn't sound too wet which is very good. But we know the kind of kid Avery is, he can flip the script at any moment.

Last night we were home and the renal dr. that has been consulting on the case called me. What a nice guy. He explained a lot, and he felt that in fact Avery's kidneys were pretty "smart". That is why they are holding onto the fluid bc they think they need it. Some testing he did confirmed that but he said the lasix he has been getting also taint the test. Although he does not know why he is not urinating without lasix and is third spacing into his lungs. I told him it's likely mito related and also bc all the vessels around his head and neck are completely stenotic and he didn't disagree with that. His recommendation is to completely stop all lasix and wait and see. We know he will go over 24 hrs with little urine and be much heavier in the am but he feels if it's not affecting him respiratory wise then to just ride it out. He wants to be sure he actually needs lasix before testing it out without them. I do agree but it is going tough weekend for him and I'm so glad this is getting done inpatient. Again, there is a good possibility his body needs the lasix but he doesn't know why. If he needs it then he does. It's just another big intervention for home especially with a kid like Avery so I would like to avoid it if we can.

Hope you guys were able to understand at least some of it bc I'm not sure if I even get it myself. I'm hoping we get get things squared away by mid next week. Rick and I are going on our annual white water rafting trip it I would feel better if he was back to baseline while we are gone. I know wishful thinking!!! Only time will tell.