Ashley's Story

She will leave fingerprints all over your heart



From this on Sunday morning...

to this on Monday morning...

to this today...

Last week was a week of healing. This week is a week of transitions. Ash has gone from being on the vent, to the nasal cannula, to nothing. Last night she took herself off of oxygen and has been satting in the mid 90's all on her own ever since. She is generally really good at letting us all know when she is ready. Once again, she showed us that she was. Her breathing is still very loud and very labored. Her throat has a lot of healing yet to do. So much more than what any of us had expected. It is still very swollen and traumatized making her breaths sound awful, but the sounds are coming from the airway and not the lungs. Her lungs are well and functioning properly. Her airway is struggling and yet she is breathing all on her own.

Today we began another transition in preparation for our final transition home. We began moving from IV narcotics to oral narcotics. Ashley has been on some MAJOR doses of medications over the last 3 weeks and they each require a slow wean off. She is currently being switched off of the ver sed and fentanyl drips. She initially went to IV methadone and IV ativan, but today transitioned to oral methadone and oral vallum. She is also recieving 37 mics per kilo of fenatnyl through a patch she wears on her back. It is a long road back. We are anticipating months of weaning her off the narcotics. Life in our home is not going to be what it was, but it is still life and it will be in our home and for those two things we find gratitude in our hearts. We are seeing the light at the end of this current tunnel all the while knowing the longest tunnel of her life is just around the corner.

Once Ash has successfully transitioned on the medications we will transition her back home toward the end of this week. Yes, I said HOME this week. It will be different than it was, but it will be just as precious to all of us. I have a lot to get done in preparation for the transition and I am hopeful to make it home tomorrow to begin getting things in order for her arrival. At this time we are going to attempt to keep Ashley Kate in her own bed although we are moving it in to our room next to ours. We believe she will do better once we can get her back on her own routine and schedule and into her own room, but for the first few weeks she needs to be close to us so that we can administer meds, tend to pumps, and all of our new normal. I have lots of organizing of supplies to get accomplished and lots of prep work like moving closets around so that her supplies can be stored close to where we will be sleeping. I also need to get all the heavy cleaning done like bathrooms, floors, windows, etc. so that the chemicals will not be fresh in the air when she arrives home. Her respiratory status is very important at this time and very fragile. We have to protect it especially while her throat is still healing.

Once we make it home then we will focus on accepting one day at a time. Trying not to dwell on the what ifs and the unknowns of her health status. We want to live, to love on her, and to enjoy our time together. Whether that be swinging in the play room or snuggling on the couch. Its all going to be precious and not taken for granted. We know the obstacles that have been set in front of her. We know we are hoping for the opportunity to return to Omaha. We know we will be waiting for the phone to ring if transplant chooses to re list her. We know when that call comes that life will once again change for our family as Ash and I leave our home to fight for her life. We know all of this, and yet we don't want it to consume our thoughts causing us to miss a moment of living. Blake and Allie will be just as busy as always and we are going to do everything we can to be completely present for all 3 of our children.

I'm looking forward to going home. To that first night with all of us back in the house together. Life is messy. Its sometimes scary. Sometimes unpredictable. In the end no matter what else is taking place around us our desire is to be together. If God grants us that opportunity then I can assure you that we won't waste it. Not even one moment of it.

Ashley Kate wants to live. Dave and I are going to do our very best to keep her as safe as possible while we allow her to do just that. As hard as it is going to be for us not to keep her trapped in a "bubble" we just can't do that to her. She's fought too hard to experience life and so we have to let her. My hope is that I can take in each moment she experiences and not waste one second of it on worrying about what has yet to happen. That is my desire.

Transition isn't always easy, but its the bridge to home and we are ready to cross it. Together.


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