Quality or Quantity?

Ashley Kate is resting on her tummy for her afternoon nap( its has only taken us two years to get her into this position), the lights are turned down, my "candle" is glowing, and the Classical Christmas arrangement is playing. As I sit here and watch her sleep I have several things running through my mind.

The age old debate about spending quality or quantity time with our children rages in a somewhat different manner inside of me. I don't ponder the debate due to many hours on the job, or a hectic schedule that takes me away from my family. The battle between the two in my mind goes something like this. Yesterday as I expressed my desires to take Ash home sooner rather than later and tried to explain that I believe we are competent, careful, responsible parents with her health it came down to this statement. "I want her days to be fully lived not just full of "life". " I know it may not make sense to some, but I don't believe that living in this hospital room has the ability to extend Ashley Kate's life past the last breath that has already been appointed to her. She will live exactly the number of days and breathe the exact number of breaths that God has given to her in His plan for her life. Whether that be in Texas or Nebraska. Only God knows. Oh, I don't always like knowing that I don't hold the power to give her a long life, but my faith demands that I realize who is really in control.

Why can't we take Ash home and move the numbers on her pumps up and down according to the teams wishes? Here is the answer; They do not want her to go home with a central line in place. Why? Because if she gets an infection in the line and ends up in our local ICU and ends up on the ventilator and ends up on dopamine then she will not be able to be transferred back to Omaha and she would die. That is the risk we would be taking. They want me to understand that risk and that they are not willing to take it. I more than anyone understand that risk. It is very, very real. It has always been real. Ashley Kate has had a central line for all but 3 weeks of her two year life. I do know that line infections in transplant children are deadly. Trust me, I know and understand. It is the fear I have battled for over two years now, but we cannot operate and make decisions based on fear. We must allow Ash to live. I have to know that I can trust Him with her days. Our position is that Ashley Kate is at less risk of a line infection with only one set of hands entering it than multiple hands a day. I firmly stand by this conviction.


Where are we today in her recovery? I think we are in a good place. She looks better, feels better, and seems stronger than she has since the onset of her rejection. For this Dave and I are so grateful. We are making progress with her feedings. Today we are at 30ccs an hour and her TPN is down to 30ccs an hour. IF she can stool less than 350cc in each 12 hour period then we will advance her by 5 cc every 12 hours and decrease her TPN by 5cc. We are praying she can stool under that number. I feel like we are making progress and we are going in the right direction. All the while I am trying not to fear the very real possibilities of her picking up an infection while we are here. She has a head cold and she continues to throw up multiple times a day.


I desperately want to bring Ash home soon. I feel like we are in a safe place at this point. I have promised to travel back every two weeks so they can see her. I have promised to do what they have asked. I will do whatever it takes. The team would like to wait longer. They are not ready to let her go because they have seen the scenario play out time and time again with a negative outcome. I trust them and their wisdom, but I also have to trust God with Ashley's life and KNOW that He will ultimately give her the quantity of days that HE decides to. Our team of doctors can not control that, and as much as I think I would like to be in control of that I realize I am not.

Is Ash giving up her quality of life during our stay in hopes of gaining quantity? I do not know the answer. As her mommy I continue to struggle with these very heavy decisions. I believe she has better quality at home with the family, but when do we take her there? I wish we knew. Dave and I are trying to take it one day at a time. Facing what today holds for our family, but still realizing that every day in a hospital bed is a day of normalcy gone we can never give back to her. Just a little peek into what my mind is pondering today. Big stuff, huh?