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.