A note from Mommy:
I'll be honest depending on when you ask me I can love having home nursing or hate having home nursing for Peyton. It pretty much depends on the quality of the nurse at that point in time.
We have had the sleeping nurses (too many to count really, it would be easier to count the ones who didn't sleep).
We have had the nurse who flushed Peyton's balloon port instead of her MicKEY button and caused it to burst.
We have had the nurse who did an emergency trach change and hooked Peyton up to oxygen when the pulse oximeter probe was not properly attached.
We have had the nurse who accused us of starving Peyton.
We have had the nurses (four during the week) who never noticed Peyton had the wrong size trach in.
We have also had the nurses who have loved Peyton, showed up on time, were dependable and instilled confidance in us so we could sleep soundly each night.
When we moved to Utah and knew we would have no nursing for an unknown amount of time, we had prepared ourselves. When a few months later Peyton's name came off the waiting list for the waiver program we were still planning on having only 50 respite hours per month. We had already completed Utah's acuity grid for home nursing and Peyton was not anywhere close to having enough points. So when the agency was able to "find a few more points" we were suspicious. But after months of not sleeping well and one hospitalization, we were excited to have nurses during the week nights again. With Peyton having five colds and a stomach virus since the nursing started back up the benefits have outweighed the negatives of having them.
But we have been waiting for the other shoe to drop and it finally did today. When the nursing agency filled out the acuity grid a few months back we were considered new despite having worked with the same agency in California for close to three years. Therefore, the agency just had to submit the grid but no nurses notes as proof of the points they were taking. Now here we are a few months later and it is time to recertify and surprise - she is 10 points shy of meeting the criteria. Hmm let's see - she needs 21 points and only 11 could be found this time. This despite Peyton now receiving g tube feedings over night and getting two medications during the night shift - all changes since when she originally "qualified" in the summer.
I want to be crystal clear that this is not the fault of the big bad insurance company (they are often blamed when they shouldn't be). They reviewed the documentation (or lack thereof in this case) and determined Peyton just didn't meet the criteria - she is not sick enough. They went out of their way (you know who you are) to get us some hours to wean us before cutting us off completely. We decided there was no sense in dragging it out and I contacted the nursing agency today to let them know not to send anyone out - we were stopping the services immeadiately.
Here is what I think is important to know - I am sure we are not the only family this has happened to. However, I knew from filling out the grid myself that this was going to happen sooner or later and as a result we did not count on having the hours forever. There are other families out there that are not as skilled in navigating this very complicated health care system and may be devestated upon learning that the hours they counted on they are no longer available to them. I am sure the agency will deflect blame to the insurance company and that family will be none the wiser. But we know and now you do too.