Pushed to the Back

We've been home since Saturday afternoon and Ash has been on this course of treatment for her blood infection since Wednesday or was it Thursday that we went back to the PICU? I'm so tired I can't really keep the days of this past few weeks straight. Anyway, I had really hoped to see some improvement in her by now. Usually after 48 hours or so she begins to start feeling better and starts looking more like herself. This has not been the case this time. The only improvement in her condition has been the absence of fevers. I'm not convinced that the leaving of this infected line in place was the best idea, although the physician did speak with the head of transplant surgery(also known as the "transplant god" out in Omaha) and told me that everyone was on board with the plan. I just think that she's not bouncing back because the line is still infected and still in place. I may be way off base, but something is different with her this time. In addition to the infection she is trying to heal from not only the incision in her neck, but also the extensive bruising she has all over her neck, shoulders, arms, hands, wrists, ankles, and feet. She truly is black and blue all over. The only sign she has given me for the past 4 or 5 days is "hurt". She is really hurting, and my heart is really breaking for. She's not smiling, not communicating much. Every once in a while she lifts her tiny hands up in the air and motions for me to pick her up and hold her. Other than those two things, she's pretty much "silent". This too is breaking my heart.

Ash picked up a rather nasty respiratory cough this last admission. I'm assuming it has come from the multiple intubations. It's pretty bad. She coughs all night and all day unable to truly rest. The coughing only makes her vomiting worse. Again, she is sleeping upright in her car seat next to my side of the bed.

We've got to hold on for 6 more days until we take her back in for yet another intubation and more invasive procedures. Then if she has clear cultures we will take her back to the OR for the 4th time in 3 weeks in an attempt to give us some access so that we might put her back on full strength TPN. Her tube feedings remain at only 5ccs an hour and the goal of 80ccs seems so very far away. Our hearts are more discouraged then they have been in a very, very long time.

None of us speak much about what we fear is happening with our Ashley. We try not to talk about the "constant" infections(3 in 8weeks time) from her leaking gut. We do not mention the "O" word or the "R" word. Still this afternoon I found myself helping Blake pack up his closet and falling into conversation about how very sick his baby sister truly is. It was completely accidental, but I'm sure needed to be discussed for some reason. At the end of this conversation my son shared this, "I just keep it pushed to the back. I try not to think of it and don't want to really know it even though I do. I think its easier if I just keep pushing it to the back of my head." Then he left his room and I found him cuddled up next to her on my bed singing the theme from Wonder Pets for her. There were tears in his eyes as he reached out to brush his fingers across her hand.

This is hard. It really is very, very hard on all of us right now, but especially on our sweet Ashley. She has really no strength, no spunk, no desire to play or even to sit up for more than a few moments at a time. My heart is breaking over her broken body, and stability seems almost impossible. Its just an impossible dream that is dangling itself before our eyes, but always out of our reach. Dave rocked her this morning and stated, "Why? Why does her life have to be so hard!" I had no answer and all I could do was walk away.

The last thing I want to do is take her back into the hospital. I just want to give her all the things that I can't. Health. Strength. Speech. Mobility. Instead I continue to give her my love and my heart. I have nothing else to give.

That last sentence pretty much sums me up tonight. I have nothing else to give. Nothing. I'm exhausted from the constant IV schedule she's on. I'm exhausted from the inability to sleep for fear of something happening to her while I do. I'm exhausted from worry of where she and I are headed. I haven't been at this place for a very long time and the attempt to keep myself out of it is exhausting me.

Still I look to left and I see His gift to me. To all of us. Wrapped so tightly in her quilt, strapped safely into her car seat, and looking back up to me to tell me that she's hurting. I love this child more than anything in this world. There is nothing I would not give to make life different for her. If I could ask you to do one thing for Ash or for me it would be this. Never take for granted the health of your children. Never forget that their lives are a gift. Never fail to thank the Father for the peace that comes in not having to fear for their every breath. I just never knew how painful life could be until I loved my Ashley. I never, ever knew. God, forgive me for not being aware of the burden that other parents have carried long before I picked mine up. Forgive me, and please show your mercy on my baby. Thank you for making her mine. Thank you forever. I would want it no other way.