Learning to Cope

Ash has finally stabilized since coming off of the ventilator this morning. We are so thankful that she is no longer on it. For a while I feared she would be placed right back on. It took her over an hour to settle down enough and to get her sats at an acceptable level. Dave left with the kids so that they did not have to watch her struggle. She is requiring some oxygen support in order to maintain her sats. She is trying to rest while lying on her tummy, but I know that she must be uncomfortable with her new incision and chest drain. She seems to sat better on her tummy then her back so for today she is learning to cope with this new position even though it is uncomfortable. Ash is not the only one learning to cope with the situation she is in today. She is withdrawing heavily from the narcotics that have helped to sedate her over the last week. Her daddy is struggling as he watches her shake and tremble. It is not an easy thing to observe. I have seen it time and time again and although it breaks my heart, I have gotten used to it. If you haven't witnessed her go through it then it can be very difficult. I wish we could skip this part of Ashley's recovery. She is so miserable and it lasts for days and days. Not only do her little arms and legs tremble but her face shakes so hard that her little cheeks do also. I know she doesn't understand why this happening to her.

As we approach the beginning of another week here in the PICU my prayer for my Ashley is that she might make progress. Tomorrow they will begin introducing some more fluids into her system. She is now so dry that her little eyes are sunken and bruised. The fluid balance in a transplant patient is so difficult to figure out. It seems to be the enemy. What a fine line it is between overloading them and dehydrating them. This is one of Ashley's main issues. Trying to figure out what is a safe amount of fluid to allow her body to carry has not been easy. I also pray that we might begin to tackle her feeding issues again and that this time we might find a solution to the difficulties. I am confident that God has a plan in mind and I am waiting to see how He will reveal it. For today I am thankful to have David by my side as we watch Ash learn to cope with her new set of circumstances. Tomorrow I will learn to do it alone once again and I will begin counting the days until the family will return.

We are off to go sledding and to enjoy the time that we have left. Grandma will be sitting with Ash as she sleeps and spending some precious time with her. I am glad that Nan and Grandma were able to come and visit with Ash. I think it is helpful for them to get to pop in every now and then. I know how hard it must be as they watch her struggle from a distance. I hope and pray that her grandparents from Oklahoma will be able to make a visit soon. I think it helps to be able to actually see her. Thank you all for your prayers today. They mean so very much to us. May God bless you today. Trish