This post is long overdue. I've been delaying it. Its just not been in me to share the updates and the details of everything that has been happening in Ash's little body. I guess the best thing to do is jump right into it, get it posted, and then try and not dwell on it any longer. I know so many of you have been waiting to hear how she is and if she's getting well. Its for you that I'm writing this post.
Ash is not getting better. There... I said it.
I watch her feel a little less herself every week. I see the color of her eyes and the glow of her yellowed skin and I know without even seeing the lab sheet that she is not better. Her bilirubin is now as high as it was when we started her on Omegaven two years ago this month. Brutally honest....its very frightening.
Along with her climbing bili one of the side effects is that she feels the need to claw at her skin to try and relieve the itching it causes. As a result of this constant clawing and scratching she has opened up a portion of her transplant incision. She has about a 2 inch wound that is draining a foul smelling drainage causing us to pack and dress the wound daily. She has several other areas on her body that she is scratching raw too.
Another side effect of her liver struggle is the need to sleep. She requires many, many more hours of sleep than she did just a couple of months ago. I think Dave said it best last night when he said to me, "She's just getting tired. Her little body is tired." I held back the tears as I sat in the dark riding next to him in the car. He's right. She is tired.
As far as her liver enzymes are concerned they are showing some improvement. I'm thankful for that. The enzyme levels in her blood are checked each week to show us how well the liver is actually functioning and if its doing its job or not. Just a couple markers that are used to give us an overall picture. So I look at those numbers each week and am happy to say that they are dropping closer to normal ranges. The transplant surgeon we saw in Omaha told us he expected her bili to stabilize and return to her normal baseline, but he couldn't say why he thought it would or when it would happen.
An ultrasound was done while we were in Omaha to help us determine whether or not there was more disease progression than when the last one was done two years ago. As far as we were told it remained unchanged which did not fit with what we all had expected to hear based on her lab work. It is a blessing to not see marked changes in it, but still gave us no insight.
Ashley Kate's skin has a toxic smell coming through it. We've seen this happen to her before transplant when she was a tiny baby. Its just something about the liver being sickly that has a very distinct odor. No matter how much I bathe her or lotion her skin I can't get rid of the smell. It hurts my heart so deeply. I've never been able to fix much of anything about Ashley's broken body, but I've always done my very best to make sure she stays clean, smells good, and feels pretty. Those are little things I do have some control over and to think that someone may come close to her and think that she smells bad is very, very hard on my heart. I'm trying so hard to fix this, but I know I'm failing.
Ashley's calcium levels in her blood have been critically high for close to 6 months now. Basically calcium is being "leeched" out of her bones and teeth and is registering higher than normal levels in her blood. The answer we have been given is that its part of extended TPN dependence and disease progression. Her teeth are very, very weak and they are all loose. Including her permanent ones. It breaks my heart to see this each time I brush her teeth. I fear that eventually she will lose them all. She bleeds quite a bit from them and over the Thanksgiving holiday we removed several, very large blood clots from her mouth due to her teeth that are pulling loose from the gums. Blood is always scary. No matter how many times you witness this happening the large amounts of loss are frightening. We had watched her lose blood for several days through her g tube before it was determined that it was indeed coming from her mouth. There were a few days when we feared she was bleeding inside her stomach. I guess we were relieved to see that it was coming from her teeth.
Along with the calcium issue it is assumed that she is at high risk for bone fractures. It has been discussed both in Omaha and in Shreveport that on her next hospital admission no matter what it may be for that a full body bone scan will be scheduled.
She has some ugly skin issues around her g tube and it leaks and bleeds daily. It is so very, very painful for her when I clean and dress the area. I am working to get scripts for a larger size to see if changing sizes might help with the issues we are having with it. I hope to make some progress in this area this upcoming week.
Her eyes, her nose, and her bottom are leaking bili. She appears to be crying sometimes when she's not. Its just bili leaking from her sweet eyes. Her urine is a very, very bright color due to the bili that is being spilled out along with it.
When I list it all out I know it sounds pretty ugly. Daily life and cares are becoming more difficult. Still though she is not in pain or showing us much discomfort from the liver becoming ill. She does still smile and laugh and play every day, although it is not a constant in our lives as it has been the last 18 months or so. We are noticing that she is not the same little girl she was 8 weeks ago. She's struggling a little more now.
But...there is still a lot of spunk, and fire, and attitude in her! I smile and laugh at something she does or signs every single day. We are still determined to allow her to experience as much as she can and allow her to live as fully as is possible for her in this life. We are focusing on spending the holidays together with her and our teenagers. She is still happy although tired. She loves for the Christmas lights to be glowing and for the carols to be playing. She requests both each morning when she wakes. As I tuck her into bed at night she signs "listen" and then snuggles underneath her quilts as the music fills the air in her room. I haven't bought or wrapped a gift yet and I'm not so sure that I will this season. We are all so focused on what this holiday truly means in our lives and in our home the rest just doesn't seem to matter that much anymore. There are gifts in this life that can't be bought. Laughter...peace...joy...contentment...family...time. How do you buy anything that can even compare? I just don't think you can. Somewhere along this journey we are all on with Ashley Kate she taught us to be thankful for the things that money can't buy. There is a magic in that itself. Finding how to be content in the moment that we are being given. Its the sweetest thing I've ever been given and to think that our tiny baby gherkin was placed in our lives to show us something so profound.
I won't dwell on these things I've shared much more in the journal. I put them out there because I know of your concern, but I simply can't be sad right now. I have so very much to celebrate and not a lot of time to in which to do it. I will focus on the joy of our holiday season for the next few weeks unless any major changes occur in her medical status. I thank you so very much for your love and your prayers. I know how much you love our sweet Ashley and that blesses this momma's heart more than you will ever know.