After 18 months of 16 hours a day of private duty nursing, we are finally free. No more nursing.
I am relieved that Adam no longer requires this many hours of daily care. It is hopeful news to us and it was been a ridiculously difficult time. Of course, it will still be somewhat hard- but this is great news for his care.
I have some mixed feelings about it all:
- I'm glad I have insurance that covered private duty nursing, as many people do not have that in their policy, if they even have health insurance.
- It was like being on a reality show- hardly ever any privacy in past 18 months
- There were often power struggles between us and the nurses and times when I really just needed them to back off.
- They really did help to care for him and with so many medications, feeding tube feeds and the tracheostomy care- Adam was a two man operation most of the time.
- We said our "goodbyes" to all of them and I really do hope that several will stay in touch, it was like they joined our family
- A bit nervous about sleeping tonight, but I think it will be fine. We trust our doctors and I feel that because his ENT and pulmonologist at CHOP said no more nursing, he does not need nursing.
No comments:
Post a Comment