9.29.22 More

This past couple of weeks Aimee has had some pain episodes that seemed to be associated with her medication dose times. Her GI doctor is helping us to cut back some on her medications that are put into her intestines through her j-tube. However, it is a tricky game. We don’t know how much she is actually absorbing really anymore, but many of the medications are to help her be as comfortable as we can manage. Yet… they could be causing discomfort by their sheer volume. They are also to keep her intestines working as much as possible, which in turn prevents pain. Makes my mind spin to sort out. 

Last week her reoccurring trachea infection really flared up and we had a couple of days with a lot of treatments, a lot of clogging the vent, and increased ventilation and oxygen needs. I wrote a lengthy request again to our pulmonologist to ask that he consider putting Aimee on an IV antibiotic. And he agreed to do it this time! They did try to encourage us to bring Aimee inpatient, but we had the palliative team, the concurrent/hospice team, and the GI team all rooting with us. We want to be home. There is a significant increase in risk since we are giving the medication 3 times a day for 14 days. This means an extra 42 line accesses of her central line. It has been a bit of a learning curve for us to figure out, however, we had already been entrusted with accessing the line extra for fluid bolus between her doses of TPN and lipids. We were confident that we could do it safely. 

This strong antibiotic seems to be working well and Aimee’s symptoms have improved significantly. She has had more energy and also slept more deeply than we have seen in awhile. She has been interactive and playful. She also seems to have less fluid retention and inflammation. In addition, she may have had an ongoing bladder infection that appears to have cleared up as well. She is on a constant antibiotic into her j-tube to prevent UTIs, but, as I mentioned above, we are not sure how much of it she actually absorbing anymore. As our hospice nurse said, this IV antibiotic is a good reset and knock down of any infections that could be happening in her body. It can be very difficult to tell if she has any infections since her body temperature fluctuates all over the place for no apparent reason. Just in the past day she has been going up and down between 94 degrees and 98 degrees all while in her bed in a temperature controlled environment. 

This girl keeps us working! 

If you could pray for us and our continued health, we would so appreciate that. We are grateful to be here, grateful to be able to do all that we are doing, but it is a lot. I love taking care of Aimee and seeing her sweet smile return. I love learning with the kids and teaching them. Yet, we both feel numb, dazed, and almost sick most of the time. Especially since we have added back in school. I am hoping for the energy to be able to have connection while we are here together, instead of merely bouncing from task to task, surviving. 

Pray for our health. And for joy in the journey. 

9.6.22 End of the summer update

Aimee is doing quite well right now. Right at this moment as I write this. Every day is different, with ups and downs, highs and lows. Some very sad, painful times, but still more calm ones. She is currently finishing her 4 week cycle with the inhaled antibiotic, which really helps to keep her trach infections damped down. When she is off of the antibiotic for 4 weeks, it is a struggle with the round the clock intensive care. She is too exhausted during the infections to interact. So, we are savoring these days with her little smirks and occasional beautiful smiles. They really keep us going. To know that she is happy, comfortable, and home brings such contentment to my own heart. 

We had a few highlights this past month. We celebrated our 17 year wedding anniversary as a family with a fire and s'mores. It wasn’t glamorous, but it was sweet and memorable. Any moment that includes all seven of us feels weighty and important. It is tempting to wallow in the disappointment of what we can no longer do. We can no longer go to bed together at night or go on a date. We can no longer work together outside or grocery shop together or take the kids somewhere fun together. Yet, we CAN work together caring for our family and doing our best to hold on through the storms together. So grateful for Ed, for us. 

We also celebrated Louisa’s 3rd birthday!? I KNOW! How can it be!? She phenomenal. And wild. 



We were able to enjoy several different visits with family this month too, which we all loved, but it is especially a big deal for the kids. Aimee wasn’t awake very much to enjoy many of the visits, but she did have her own private concert and her window open to hear cousins playing. 







We had the big heartbreak last week of having to put down our wonderful milk cow Dottie. She had been with us since she was a calf 7-8 years ago and was the backbone of our little homestead. After her calving last month, Ed worked so hard for weeks to nurse her back to health with the help of a vet. Yet, in the end, she could not be saved. Such an exhausting, emotional experience. And so disappointing. Her bull calf Ernie is doing really well.

The weeks with the cow, particularly the end, really brought up all of our emotions about Aimee. We have struggled this past week to get our feet back under us and feel steady again. Life is not forever. Each day brings a new mountain to climb or valley to cross. We aren’t guaranteed good weather and are not promised how long the journey will be. We must keep looking forward for signs of hope, breaks in the clouds, the wayside dandelion, or the perfect fallen tree to rest. Onward we go. 

As we do head forward, we find ourselves with even less help than when we last posted. Our hopes for another nurse did not materialize and our other nurse left. We do have one wonderful night nurse, but she doesn’t work often, 2 nights this month. We are trying to sort out how we can possibly do more with less help and little sleep as we add back in homeschool and Ed continues to work. I love teaching and learning with the kids. I love the intentional time together. What is it that can give to make room for this added focus? It feels like everything left is too essential to cut out. Every one of these days I am so grateful that Ed and I worked really hard to set up systems for Aimee’s care. We are on the same page and super consistent with each detail. And we must be. This is crazy complicated.

At least we do have Louisa to help.

School has begun, but we did finish the summer with a few outings. One of us stayed home with Aimee and the other went adventuring with the younger four. Ed took them to the fair. I took them to the zoo and to the beach with friends. We have these memories in the midst of the uncertainty of our day to day life. 

Thank you for cheering us on as we continue on the journey.