This last day of 2025 it seems fitting to sit and reflect. This year Ed and I have begun opening ourselves to new life. We have felt by necessity that we needed to focus inward, to be isolated in many ways in order to cope with the intensity and weight of Aimee’s care. The impact of this situation on our family and our individual health has become a noticeable obstacle to being open to life socially, mentally, emotionally, and now more physically. We have been cautioned many times by the concurrent care nurse that our lack of sleep and the weight of this care long term will have repercussions on our bodies.
After helping Ed through his injury this past year, I am appreciating the physical strength that my body has. Yet, I am also recognizing that my natural ability is limited and can only last so long. If we want to be able to continue and live a long life, we must make adjustments. This summer, we focused on reclaiming some of the garden and spending time outside when possible. We have spent the last 6 months pushing harder to hire more night help. Years and years now of sleep deprivation has increased as Aimee’s needs have increased.
What are we to do? What happens when you give all, but the need for all keeps going? How do we pace ourselves for the long haul? How do we lead our whole family when we are watching each symptom and managing each decision? We aren’t sure, but we do know that we must make some choices, evaluate in a less reactionary and more conscious decision type of way how to do life.
So we have pushed and interviewed and hired and lost several potential nurses. Most of the issues seem to stem from the incompetence of the nursing company. We finally decided to try hiring a 3rd different nursing company. They had 2 nurses who had just graduated and just been hired available for night shifts. We have spent the past nearly 2 months training these new nurses and getting everything in order with the new company. Not recommended. We would never do this again hiring 2 newbies with a new-to-us company all at the same time. It is hard to rest because at any moment, we can be called on to help. It is like we are on call constantly and also ultimately responsible to make all the decisions. The new nurses can not touch anything with the central line, respond to those alarms, do any TPN hook up/disconnects, or give doses of IV antibiotics. However they can give other meds, reposition Aimee hourly, do respiratory care through the night, empty ostomy/catheter, keep track of vitals, and alert us to other emergencies as needed. We hope that in the long run this will be worth it. Right now it feels like we didn’t have this to give in our energy tank. Like we were already deep in debt and now we’re taking out a loan hoping it pays off in more rest overall. It is much easier in the short term to do care ourselves, know how it was done, and keep everything consistent. But… that circles us back to the long term life question.
Anyways, on the Aimee front things are always happening. This month the big news was that we finally got her approved for an iron infusion at home. Her blood levels (hemoglobin, hematocrit, red blood cells, ect) have been going down every month, approaching needing to have a blood transfusion. However her iron wasn’t low enough so the doctor couldn’t get insurance to cover an infusion. Finally last month it dipped just below normal and we were able to get it approved for as many as we want over the year. Hopefully next week when we do the labs her blood levels will at least be stabilized.
She is currently in the midst of another 14 day course of 3 different IV antibiotics. Her ongoing trachea infections are a real challenge for her whole body. We have seen symptoms from respiratory distress to systemic issues with kidneys and some hinting towards sepsis. It is not great. We have her on a schedule at this point rotating between this 2 weeks of IV antibiotics that run every few hours and then to an inhaled antibiotic for 4 weeks and then to a 2 week break before going back to the IV antibiotics again. Overall, it is working well enough to give her good days where she can smile and interact. This is why we are doing it all! She is worth it.
The rest of the family is growing wildly. What an adventure it is train up children! We thankfully have day help from my niece for Aimee 4 days a week so that I can focus on homeschooling. Ed takes 1 day of state leave each week to care for Aimee so that the 4 younger kids and I can go on adventures or to homeschool co-op. It is such a blessing to be a part of the kids’ learning, to process our challenges together, and to encourage each other towards kindness, wisdom, and hope.
The kids are each a delight in different ways. Caleb is now the tallest member of our family. He is an animal whisperer and enjoys spending his free time creating art. Elliot is growing quickly as well. He is working on writing a book series and spends his free time reading. Walter is our entertainment. He loves production and storytelling. At this time, he wants to be a building inspector so that he’ll have stories to tell his kids at the end of the day. Louisa is an animal lover. She draws horses all day long. She wants to be a police officer and also a night nurse.
I do apologize for the lack of Christmas cards this past two years. Many good things must go by the wayside. At least for this season.
If you are thinking of us, please pray for:
Aimee’s energy levels to be stable and for more interaction with her. For her infections to respond to the available antibiotic options.
Ed and I to be able to find true rest. And that the rest would restore us to ourselves.
The 4 younger kids to not feel second class to Aimee. And to be given what they need to flourish.
Thank you for remembering us with so much grace through these years. Acute is hard. Chronic is hard. Life is hard. But it is also beautiful.
