Day +19

Today is a good day... Addie has officially turned the corner and is headed down the road to recovery!!  She is doing so much better, still exhausted and sedated, but is doing miraculously well!!  She is off of her BIPAP mask and is breathing perfectly on her own!  They have her on a little bit of oxygen just to give her heart some extra help!  She has not needed dialysis for the past three days and her kidney numbers have not worsened!!  She is making urine and we have been doing lots of potty dances!!  They removed her urine catheter today, which I was ecstatic to see go!!  It was convenient but a definite risk for infection!!!  She is shedding her skin :) which is a normal part of transplant but otherwise looks great!!  She is very weak and still sleeps most of the day!  They are allowing her to drink water and suck on Popsicles which she enjoys!!  They continue to feed her through a tube in her nose and intravenously and she is tolerating all of that very well!! 

Addie has another eccocardiogram tomorrow... Please pray that her heart has made a full recovery and that she can be off of the heart medicine!!  Her BP has been a little finicky the past few days and the doctors feel it is mainly due to her kidney function... Praying that those kidneys continue to improve!! Pending her heart and her kidneys, we may be able to move downstairs very soon... I don't like to get ahead of myself because you never know what the day will bring but we are definitely closer today than we were yesterday :) she is definitely moving in the right direction!! 

I can not describe how incredibly thankful I am that my precious baby is healing!!  It really is a miracle that she is here today and doing as good as she is!!  I have heard multiple nurses tell me that it isn't often that they see a transplant child go back downstairs after being in the PICU. I just had a nurse tell me that it is truly amazing that Addie was extubated (taken off the ventilator).  She told me that the majority of transplant patients that are intubated do not survive!!  Wow, did that make my heart shake... It made me sad, scared and unbelievably happy all at the same time!!  I am saddened for those families that have to say goodbye to their precious children.  I am scared that Addie could still regress but I am so incredibly happy that she is still here with me today!!  I just said to Reed that I almost feel more anxious now... Scared that once again the floor will drop out from beneath us and that we will once again be close to losing our baby girl!!  But then I step back and remind myself to not fear but REJOICE in this moment!!! I push the fear and worry out and instead fill my heart with gratitude to Him, thanksgiving for saving my sweet Addie Bean!!  He is the reason that she is here right now... I felt Him in this room with us, healing her and comforting me!!  Thank you Jesus, for your unfailing love and your miraculous healing power!!  Thank you for these wonderful doctors and nurses and for giving them the wisdom to save my child!!  I hate that I feel nervous at my excitement and happiness and I hate that my tummy is rumbling right now writing this post.  I hate that the devil puts fear in our minds and is whispering to me right now, "Mandie, don't be happy in this moment because Addie may still not make it!"  I say forget that nonsense, I will trust my heart where Jesus resides and I will push those fears aside and give thanks for this moment!! 

Each day brings us closer to recovery and closer to Him!  Please continue to pray for Addie's body and her fragile organs.  She continues to run fevers sporadically, please say a prayer that she will NOT get an infection and it is merely her body recovering and working to support itself... Please Jesus NO infections!  Addie still faces a long journey to conquer this but I know that she can do it... No doubts that my baby will be victorious!! 

Go Team Addie

“But Jesus looked at them and said to them, ‘With men this is impossible, but with God all things are possible.’”

Matthew 19:26

Addie in her squishy bandages to make her mask more comfortable, taking a break from her BIPAP to see how those lungs would do on their own!

Daddy wasn't going to shave his beard until Addie came home but the second she woke up and saw that furry mess she put an end to that... Thank you Addie!!!  She is the boss of the family!!