Entry by Josh:
4:20pm
Hi everyone. This is just a first attempt at the journal. I'm not even sure who is able to see this yet.
Michele and I have been meeting with a whole bunch of folks from Children's Mercy over the past two days, and they have all been wonderful. Truth is, we wish we had never met any of them, but it's clear that they love what they do and have been so great with the care they provide.
Avelyn...She continues to progress with less fluid in her lungs but there is still quite a bit there. The fluid affects her breathing, so I'm sure that many of you already know that she is on a ventilator. She is attempting to breath on her own as well, but without the kind of capacity she would need to sustain things. Her heart is thick, and this is causing blood flow issues. There have been lots of tests to determine the cause(s) of all of this but they don't know yet. She also is having a bit of a hard time going potty on her own, so they have given her a steroid to help with that. They have found a few other things and plan on conducting a few more tests, but for now I'm going to end this journal entry.
We love her so very much, and appreciate all the support that you have given us, and will give us.
4:20pm
Hi everyone. This is just a first attempt at the journal. I'm not even sure who is able to see this yet.
Michele and I have been meeting with a whole bunch of folks from Children's Mercy over the past two days, and they have all been wonderful. Truth is, we wish we had never met any of them, but it's clear that they love what they do and have been so great with the care they provide.
Avelyn...She continues to progress with less fluid in her lungs but there is still quite a bit there. The fluid affects her breathing, so I'm sure that many of you already know that she is on a ventilator. She is attempting to breath on her own as well, but without the kind of capacity she would need to sustain things. Her heart is thick, and this is causing blood flow issues. There have been lots of tests to determine the cause(s) of all of this but they don't know yet. She also is having a bit of a hard time going potty on her own, so they have given her a steroid to help with that. They have found a few other things and plan on conducting a few more tests, but for now I'm going to end this journal entry.
We love her so very much, and appreciate all the support that you have given us, and will give us.
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