Ava had her Endocrine appointment today and we have more GOOD news! The doctor wants us to go off steroids next Monday! No more 'roids! Praise God! We are able to go down to a 1/4 tablet and then next week, if all goes well, we can go completely off unless she gets sick. We don't have to give her a stress dose if she just gets a cold. We will have to wait a couple of days after to go off the Atrovent puffer. She hasn't been off the steroids for a very long time probably since she was a couple weeks old. I really wonder why the doctors at Sister's didn't put her on them right away? They made them seem so risky (which they are a bit), but the value totally outweighs the risk. I am sure I will find that out in the future. I sometimes wonder if there is something we could have done differently. We still don't know why that left lung has so much trouble. But this journey isn't just about Ava and our family, but a journey for us all. If a few friends and family get some help from this, then so be it. At least our lives have really meant something and made God happy.
The other news is the Cardiology doctor told our pediatrician that it's ok for Ava to live her life and be under 95 for her O2 saturation on her pulsox. He didn't bat an eye when he said she could be at 90% and he even said if she was 89 when she was asleep he didn't have issues with that either. I will have to have him talk to Lung Center to make sure they both are on the same page. She is now 3 days without O2! Yeah! She is asleep right now and she is at 98% saturation, ok, make that 99% (out of 100). Awesome!
Ava weighs 10.8 kg = 23.81 pounds. Length 73.9 cm = 29.09 ".
Everyone is so happy that for 8 1/2 weeks Ava has been healthy! Her new record!
Thanking for this wonderful time and praying for continued success...
So happy to share in your good news about Ava. Thanks is awesome. God is so good. - by the way the wrist is healing... Nancy R.
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