We're here for the long run

Well, we've now been back here for almost 2 weeks. Over the last couple weeks, Alivia's condition has been all over the place.  They finally got her to a point within the first couple of days that they felt she was doing well.  But last weekend things started to change.  She was ok through the weekend, but by Monday morning, she sounded very congested and was just uncomfortible.  Her abdomine stared to enlarge so they did a paracentisis to remove some fluid.  the rest of the week was a lot of ups and downs.  She would be good for a day and then have an aweful night or vice versa.  We did a  lot of procedures this week including ultrasounds, chest xrays, echos, more xrays and lots and lots of labs.  and she received a blood transfusion because her blood count was down. 

Friday, we had a really good day. She was happy and smiling and playing much of the day.  She did receive some packed red blood cells that afternoon and she really perked up after that. Saturday was a complete 180 though. She was back to being way uncomfortible and not being able to breath very well due to congestion. She developed a fever.  As the day went on, she seemed to get worse and worse.  It is so hard to watch her go through that.  She just was so restless and couldn't be comforted. She only catnapped so she was so exhausted.  After shift change, our new nurse decided it was time to give her a dose of oxygen to see if that helped. It seemed to for a short while, but then she started declining again.  At midnight, we took her down for another chest x ray.  After that she finally settled down enough that she was able to sleep for a longer stretch of time.  I didn't hear much out of her during the night so she must have had an ok night.

This morning, they did another chest x ray.  There was quite a noticeable difference between the one at midnight and this mornings.  Her lungs are either showing some collapse or have some fluid in them. They have not determined which it is yet.  They decided it was time to be more aggressive with this so they moved her to PICU this afternoon so that she could have one-on-one nursing attention to stay on top of her condition and also so they could treat her respiratory problems more efficiently with higher oxygen and CPAP if needed.

It has been a very emotional morning for me and very emotional weekend for Ryan.  He saw such a huge decline in her condition since last weekend. It was very hard for him. This morning was the hardest for me. I was ok until we went to church. I think the spirit just touched me and started the tears flowing and I've had a hard time getting them to stop since then.  It was after church when they decided to move her over to PICU so that was just one more blow for us.  She was really struggling to breath and was quite non-responsive to us.  That just kills me.  I have not seen a smile out of her since first thing Saturday morning and she just seems to not see us at all when we are talking to her or trying to get her attention.  It is like she doesn't recognize us. It is just breaking my heart to watch her going through this. 

I guess the bright spot in all of this is that it puts her in better position on the list and gives her more priority. Since she had a fever, we are uneligible for a liver for the next 48 hours. But once she's been without fever for 48 hours, the liver game is on.  And we're gonna win this game!

Please keep Alivia in your prayers.  This has been hard all along, but right now I think is the hardest point we've had in a long time.  I feel like our baby is fighting for he life and it is breaking my heart.  We need all the prayers we can get so that we can have our baby back.