2.17.22 2 Weeks at Home

Aimee has been giving us a bit of a scare tonight. We are feeing a little nervous, some moments a lot nervous, that we will need to take her back to the hospital. She is showing early signs of tracheitis again. So far no temperature changes. 

Since we got home we have had many virtual appointments, phone conversations, and hospice visits. We have discussed the need for an inhaler antibiotic to keep the tracheitis away. Since she got the trach, she has had this reoccurring infection about once a month. The thought was that if we targeted it preventatively every other month with an inhaler antibiotic, we would eliminate many hospital stays going forward. Our goal is to keep Aimee home as much as we possible can. Unfortunately, this treatment would be $3,000 per month of use and insurance is fighting it. Aimee is on many multiple thousands of dollars worth of medications already, so I can’t blame them for being hesitant, but that is also less than one night stay in the ICU step-down/trach floor. Thus, even though the prescription has been written, we don’t have the treatment. 

Thankfully as the night goes on, she seems to have settled a bit and is requiring much less respiratory interventions. Ed and I are prepared to take full shifts through the night, but we will see how things progress. As long as we can stay home! This all depends on her not becoming hypothermic or developing a fever. We have a decent amount of respiratory tools here to keep her safe, but if she has a temperature change, she has to be checked/treated for a blood infection due to the central line. 

Praying that we are able to get the prescription approved quickly. I am praying that since she is symptomatic now that they can get it through tomorrow so we can pick it up with other meds ordered and treat her with it at home. I am praying that we can avoid an emergency trip this weekend and keep our girl home. 

Another reason I am praying for this is that her state insurance and DDA coverage are set to be terminated at the end of this month due to her long hospital stay. They are way behind the ball. We finally got through to someone to fix the problem, but we need to have an assessment and at home visit done by the end of this month. If she is readmitted, the termination process will continue.