12.19.21 Trach Floor 53

Aimee made a bit of improvement today. She had a fever in the first part of the day, which resolved with environmental changes in the afternoon. She is more reactive to care today. She is responding well to increased respiratory treatment and antibiotics. I am hoping that she is able to beat down this infection and have some energy again by Friday. We hope to bring the younger kids down here to open stockings and celebrate Christmas Eve with all of us together.

Ed and I spent time today putting together emergency vent, trach, and resuscitation supplies for when we do get to take Aimee home. We also attempted to prepare for a discussion with Palliative care this week about emergency measures. Making these decisions… it is so difficult and unreal. We have been confronted with such impossible conversations and thoughts as we consider the practical steps towards Aimee’s goals of comfort and home. 13 years ago we prepared in great excitement for our first so anticipated child to arrive. 16 years ago we promised for better or worse. Nearly 20 years ago we first met. And today, we talked about pain and death. It was not an abstract conversation. It was a practical discussion of what choices we currently believe are in Aimee’s best interest. 

How could we have ever endured it, to know how very much suffering this sweet little baby would have to go through in her lifetime? That we would ever have to watch our child endure this much. That we would see her triumph over and over again to live her life with grace, to laugh with such joy, to fight through the obstacles her body puts around her, to have enough hope to open her eyes again, to have enough patience to continually give it another go. She is forever changing us, our family, and those that are caring for her. As we talk together about what is best for Aimee to help her live her life to its full measure, we need to cling together as much as we can. We need to search for hope and do our best to appreciate in gratitude the days that we are given, even when they are such difficult ones. 

I am so grateful that today Aimee is in less pain and is not as lethargic as yesterday. 

I am so grateful that I have a healthy and strong body that is able to take care of her in a mostly pain free way. 

I am so grateful to have family members watching our kids each Saturday so that Ed and I can hold hands while we talk about these difficult medical decisions. 

I am so grateful for friends that send us encouragement and support.

I am so grateful that Ed still has a job to return to when we get through all of this.

I am so grateful to have kids that help me to laugh til I cry, to release some of this great mound of walled up emotions inside. 

I am so grateful to have a nearby children’s hospital that is staffed with enough trained nurses. 

I am so grateful that all of our bills are paid for this month.

I am so grateful to have gifts to give our kids for Christmas.

I am so grateful to have another day of calm progress here.

I am so grateful to have an eternal hope of true life for Aimee and all of us. In the advent preparation for Christmas, we anticipate the light dawning into this darkness. We anticipate suffering and through it, hope. And onto that hope, I will focus my eyes.