Down the hill we go.....

The day started off promising, but unfortunately it ended as step back for Hannah:(  I know by my last post it seemed that things were moving in her favor, but as the day went on today her breathing became more labored, her heart rate and blood pressure continued to increase.  Along with all that she spiked a fever too.  They started to become very concerned that she was working so hard to breathe, and at the same time worried about an infection starting to stir up.  This evening they made the decision to put her on CPAP which is a breathing mask like what you would wear for sleep apnea at night time.  They said if she did not respond to the CPAP they would really have to entertain the idea of putting the breathing tube back in.  Especially, if her body is working to hard to fight off some sort of infection.  This is not the news we wanted to hear after watching her continue to head in the right direction over the last few days.

They got the CPAP on around 6pm.  The doctors said within a few hours they should be able to tell if she would respond or not it.  Within minutes her heart rate dropped, her respirations returned to normal, and her blood pressure stabilized.  It was a terrifying moment/hours because I didn't want to have to see my little girl at square one all over again.  I am not saying we are totally out of the woods on this one yet.  We need to see what her morning labs and chest X-ray results bring, but so far she seems to be responding well.

All day her affect has been very flat and showed no personality what so ever.  It looked like she was just pissed off at the world including her mom and dad.  I even got to hold her today!  That was the biggest bonus of the day for me, but it didn't even seem to phase her!!  You could tell she needed this breathing support because once she settled down after they put the mask on, she looked so much better.  She turned to look at me with those big blue eyes, and reached out with her hand in my direction. Through that little mask, for the first time since she had the transplant she said, "Mama!"  It was absolutely heartbreaking.  I have never felt so unbelievably helpless, as a mother (and a nurse).   I just want to fix her and see my little girl sitting there smiling again.  Every time I look at her I hear that one word, and my heart breaks a little bit more.  I keep having to remind myself that this is to be expected.  No one said this was going to be easy, and we have to continue to keep our game face on and pray.  You want to hope that since she was doing so well she would continue on this upward trend, but after a surgery to this measure you have to know it takes time and lots of it to recover.

This is the downhill of the roller coaster ride that we are all so scared and terrified of, and we just need to keep moving forward.  Tomorrow is a new day and we just need to hope and pray she will start heading back up that hill.  Please say some extra prayers for Hannah tonight that she has not attracted some kind of infection, gets some much needed rest, and responds to this well.