Update on Aria

We've received the results back on some important tests that would help determine quality of life information for Aria.  While there is just SO MUCH involved in her medical case, I will try to summarize it as simply as possible:

When Aria was first delivered and life-flighted to Primary Children's, nearly all of the systems of her body were shutting down which is why she was not expected to live the night.  Since then, the doctors have slowly been healing different parts of her vitals.  She has been kept sedated so far so that she does not resist all of her tubes and wires.  The goal was to get her body stable enough to be able to run the tests that they needed to in order to figure out why this was happening to her.  As of a couple days ago they felt like even though she was still on life support she was now stable enough to start running these tests.  The results have been mostly discouraging.

They still have no idea what caused all of Aria's problems.  Everything they have tested for so far has come back negative.  There's so much wrong with her little body and its systems that it is likely a combination of things, and it's probably some incredibly rare chromosone defect of some kind.  They're about at the end of the line as far as what else they can test for.  

There is no good treatment option for Aria as there are just so many things wrong with her body.  Because of all her skeletal and muscle problems we know she will never walk, and will probably be on a feeding tube for the rest of her short life.  The MRIs and some other tests have also shown a significant problem with her neurological system, including her brain.  There's a myriad of other problems as well but these are the biggest ones.  

While things could still change at any time, right now we are looking at one possible scenario being that she spends a few more weeks at Primary Children's until they feel like she is stable enough to come home.  We would bring her and her life support system home and we would care for her as best we could but we would anticipate a short life expectancy, which could be days or weeks or possibly longer.  Without a diagnosis for her condition we have no idea what to expect which makes things very difficult.

Because we basically will be unable to take her out of the house if she comes home, we will need a lot of help.  In the meantime, Michael will need to return to work within the next couple days.  Natasha will likely reduce her work hours down to just a couple per week, as she is not able to drive yet in this point of her own physical recovery after the emergency c-section.  They also feel strongly that she needs to stay with Bennett as much as possible as his world has also been suddenly turned upside down and he has been having a very difficult time trying to understand what's happening.  Because we are basically homebound for the time being, at this stage we would really appreciate some scheduled visits at our home, especially from others who have a toddler that could come over for short playdates in order to give Natasha a short break from the constant attention and interaction that Bennett is requiring right now.

One thing we would appreciate is if people will seek information about what's happening and how they can help via our family or this blog.  It is very difficult for us to talk about in person right now.  We will try to keep this blog updated as possible, but are very limited in our free time right now so please be patient if updates are slow in coming.  If you need to contact us you can do so via text or private Facebook message.

We appreciate all your love and support.