Hearing the Giggle
Ash is settling back in at home this weekend and as she settles we've begun to hear her giggle again. What joy she has inside her broken body! We endured 18 long days without the sounds of her laughter and I knew that the day it returned would be the day she began to make her come back.
Ashley Kate is very weak. Her body has been through an incredible illness over that last 2 1/2 weeks and it is taking her some time to get her strength back. She spent all of yesterday in her bed and she slept for most of it. She is requiring a lot of rest. She is not able to sit herself up anymore and she had not been able to lay herself down either. Today we did see her lay down on her own and so imagine it will be just a matter of days until she is able to sit up as well. She was awake more today than I have seen her in weeks. All good signs of recovery.
This morning she woke around 7:30 and the first thing she did was ask to go for a drive. My heart smiled. Inside a hospital room she would have been denied the opportunity to take a drive. Inside our home we are able to load her into the car and drive for as long as her little heart desires. It was along this drive that the sounds of her giggle were heard. Joy that could not be contained...even in her tired and weak body...her joy was heard, the giggle returned.
We are treating her for several different things right now. Most seriously is the yeast in her line. We purchased 15 doses in order to get her out of the hospital otherwise she would have been required to stay inpatient for another two weeks. I would have to say...SO WORTH IT...just to have her back home. She's happy. She feels safe. She's comfortable. I'd figure out how to pay it again and again and again if need be. I'm hoping this will clear it, but if not...we will figure it out. We are also starting her on two injections each week to help her produce her own blood again. Her kidneys are no longer producing the hormone that is needed for the bone marrow to make blood. It is assumed this has been the reason for the recent changes in her blood volume and the need for such frequent transfusions. We really need this to work because the constant need for blood is causing large levels of iron to be stored in her liver and other parts of her body and adding to its struggle. Its easy enough to give blood transfusions...its not so easy to rid the extra iron that is coming along with it. In addition to these new changes we are starting her on a new medication to try and help control the severe itching she is experiencing from the high level of bilirubin in her blood. She has several serious wounds we are dressing as a result of this itching. She is clawing her self and making wounds. She has them on both of her feet, on her thigh, and on her abdomen at the bottom of her transplant scar. I am hopeful we can make her more comfortable in this area. The clawing is severe.
So...life is a little different than it has been. My mom has come to stay with us and to allow me to still be involved with everything Blake and Allie are doing. Ash isn't able to be on the go at this time and so this will be a huge blessing to us.
I've spent today resting. I think the emotional burden of the past week finally caught up with me. I'm weary. I really am. There are so many decisions to be made, and plans to put into place. Dave and I have much to discuss and we are trying to figure out how to best have these hard discussions with the kids. For now I can see the relief on their faces and hear the lightness that has returned in their voices simply because she is home. I don't want to take that from them again. I don't want them to feel the heavy burden that they carried all of last week ever again or at least for a very long time. It breaks my heart knowing how worried they were.
Most importantly though...we are hearing her giggle again...for that we are more than grateful.