Buckling Up

Last night and this morning have once again placed me and My Ashley on the Roller Coaster. As you know things can change so quickly as we go up and down from moment to moment. Through the night Ashley struggled with many things. She is not feeling well and decided to do a little investigating herself into what she believes may be the problem. She managed to pull off her ostomy bag and unpack her transplant wound all by herself. She had the wound bleeding quite a bit. The nurse came in to clean her up and replace the ostomy bag. Ash continued to moan and complain throughout the night. She never fell into a peaceful rest. Something is causing her temperature to spike with no explanation. They began to give her pain meds again last night because of her discomfort level.

This morning after my shower I came into change her diaper and saw that her entire wound was saturated with a gooey, yellow substance. As I investigated I saw that the new ostomy bag had not been sealed well and as she stooled through the night it ran into her wound. This is not good. We cleaned the wound the best we could and changed the ostomy once again. All of this is very uncomfortable for Ash. She cried and wimpered throughout the cleaning. My heart is breaking for my daughter. Her tiny body has literally been cut, bruised, poked, stitched, and so much more. She is the toughest person I have ever known. I have decided to do the wound care and ostomy care myself. I will feel better knowing that if something goes wrong again that I will have no one but myself to blame. Accidents do happen, but they can be dangerous at this point. Because the wound is left open they do not believe it will become infected.

They have tried to prepare me for a possible trip to the OR to look for problems if she does not start improving by tomorrow. They are also planning a bronchostomy procedure to be done on Ashley's lungs. I am very nervous about this. They will place Ash on the vent again and go down into her lungs to try and open up the 2 collapsed areas that have not resolved themselves. As with all of these procedures there are more risks to my baby. I am trying to hold on this morning for what looks to be a long couple of days ahead. Please pray for His protection over Ashley as she has to endure all that may come her way today and tomorrow. At this point the tears have dried and I am feeling that numb feeling that comes over me when I think about what she must face. This is a long road and it is not easy for Ashley. If you are still checking on Ashley's story then I know you are on this ride along with us. Thank you for being so faithful to pray for our sweet girl. I know it is not easy to read about the many long days and bad nights that we are experiencing. I am afraid it may be exhausting to some who are waiting to hear good news, but the God we believe in does not promise this road will be easy to walk. He does however promise to walk it with me. I know He is here with us. I feel He is in control of what seems like an uncontrollable situation. He loves Ashley and He is taking care of her in ways I will never understand. I just read Isaiah 40:12-31. Who is the God that I serve? I can assure you there is not another like Him. He is the Creator and He does control all things. I trust Him with my daughter. If I say that I trust Him with my salvation then I must trust Him with my Ashley.

It has now been 12 long days since I have held my sweet baby and been allowed to rock her, but I also realize it has been 12 long days for my precious donor family since they have touched their tiny baby at all. I can only be thankful that I am allowed to hold Ashley's hands and place tiny kisses on her cheeks. I am more than blessed.