5.20.25 Finding the Mountaintop

We spent today down at the hospital for a bone infusion. It has been a chaotic day with a broken ventilator, multiple rain storms, and 3 different ostomy leaks with accompanying changes. Yet, we did make it to settle into our room for a few hours of blood tests, results, premeds, and the infusion itself. Thankfully she has had no new factures since we started the bone infusions.

Aimee’s ongoing tracheal infection has continued to challenge her and us. Two of the initial bacteria strains have developed resistance to the big single IV antibiotics that we were using in rotation. Also, she is now classified in the hospital system as being colonized with a multi-drug resistant organism (MDRO). This added strain of bacteria that she is now growing requires contact precautions in the hospital setting. It also means that we have to change our tactic for treatment. The Pulmonologist has started her on 3 different IV antibiotics at the same time over a 14 day period. We are 10 days in now. We were nervous that we wouldn’t make it back to the mountaintop, to the place where Aimee is awake and present with us, to the place that makes all of this seem right and good and worth it. It took 7 days to see results, but we are finally noticing significant improvements in her energy, alertness, and respiratory status. Here is our mountaintop. The new combination is a much more complicated routine for us to administer as it is 6 doses per day and is being done by gravity, so we are counting drips and replacing lines and running to and fro. At least that is what it feels like currently. It is next level. 

In spring homestead news, we have a new calf named Garfield who was born 3 weeks ago and a new batch of 6 piggies to help with the milk supply. We are making cheese as much as we can. It sure is wonderful to have plenty, especially with the younger 4 kids growing like spring verdure!

4.5.25

“Grief and joy aren’t opposites. 

They exist at the same time, 

every single day.”

The roller coaster is so persistent, so continuous that the borders between grief and joy seem no longer exist. There is always something that I could come here to share in either. Today, Aimee was awake, responsive to our interaction, and several times squeezed my hand. Last week we were dealing with bleeding at her central line and were fighting to get a vitamin k infusion filled. The week before her trach infection started to go systemic and we once again were going over “the plan” with the concurrent hospice care nurse. Aimee’s insurance and TPN provider are currently in disagreement, which has threatened our ability to get her supplies. And so on. We have had disappointing news from her urologist during her stones clinic appointment in regards to the size and number of kidney stones that she now shows. Resistance to IV antibiotics beginning. Changes in TPN. Continued bed sores. Great fluctuations in fluid outputs. It just keeps coming over and over. Thankfully, in the same time, most of the weeks Aimee has been pretty comfortable with the pain patch and the medication we have available. It continues to be really sad to not hear from her what she wants through all of this. We also rejoice in days like today where her eyes shined bright and she was present with us. 

On the family front, Ed has continued to make improvement following his surgery. He is now able to walk without a cane and can use the stairs. He is doing consistent PT towards building strength and stability to go back to work in the field, though that is still a couple months away. It is going on 6 months since he broke his leg and according to the surgeon there will be longterm challenges and limitations even once he is cleared to return. 

For me this has been a monster of a journey too. Health and ability is so easy to take for granted isn’t it? I am very grateful to be able to continue forward together again tag teaming on Aimee’s cares and life tasks.