Another one is gone

Our Tuesday thru Thursday nurse was fired today.   I got the call 5 minutes before the end of her shift from the nursing supervisors to let me know that she wasn’t going to be back.  They couldn’t give me a tangible reason why, but obviously it was something serious enough that it had to be done at that moment.

Hannah LOVED her.  She was absolutely wonderful with Hannah.  I could honestly say she was the best nurse we have had since we started with nursing.  You could tell that she just adored Hannah as well.  She would sing to her many times during the day, and Hannah would have a huge grin on her face every single time.   She always was right on top of all our “daily goals” in terms of feedings, therapies, etc.

Most of all, I felt like I could totally trust her to take care of Hannah’s needs when I had to go out of the house.

It sucks.  I can’t blame the nursing company because obviously there were circumstances that warranted this termination because they know how much we liked her and how we are still in need of a normal nursing team.  I could also tell in the nursing supervisor’s voice that there was a sincere disappointment that it had to be done.

But it still sucks.   The timing is absolutely horrible.  Tomorrow I am supposed to get the sutures removed from oral surgery I had done last week.  We move the furniture to the new house on Friday and Saturday.   There will be weeks of unpacking, I’m sure.  Maybe even more.   Ethan and especially Abby are needing more and more attention these days as Hannah’s disease progression is becoming more obvious.

Most of all, Hannah needs someone she can feel comfortable with and trust.  We have had a parade of nurses since the end of March when we lost our two regular nurses.  I hate doing this to Hannah…all these new faces, new people, and we just leave her alone with them for hours on end (even if we are in the same house).

I have a tremendous, tremendous amount of guilt every time a new nurse starts with Hannah.   It kills me to just leave her alone with a stranger after just sitting with them for about 30 to 45 minutes or so.  They don’t know her cues, they don’t know her wants, they don’t know what makes her happy and comfortable.    And what is worse is that I am usually sleeping the first half of that shift because I was up the night before doing the night nursing stuff.

Right now, we only have one regular nurse, and she works on Mondays.  Thankfully one of our backup nurses was able to cover tomorrow’s shift so I can get my sutures out, do carpool, and get to the new house to pay the painters (I really didn’t want to bring Hannah to the new house with the smell of fresh paint fumes).  Friday and Saturday are covered for this week, but who knows what next week holds.

There is an emotional side of nursing that I don’t think outsiders get.   Yes, we need it to help us try to keep our heads above water each day.  But there is also the guilt and frustration because we are leaving our child to be cared for by someone else, which is a constant reminder that I, as a mom, am not able to get my crap together enough to be able to take care of her and do everything else.

What makes things worse, every single time I leave the house and leave a newer nurse home alone with Hannah, I am scared to death that something is going to happen to Hannah — her trach comes out and the nurse can’t get it back in, she has a tantrum that leads to breath-holding, etc.   It takes me many weeks before I feel comfortable just leaving her with the nurse without feeling that way.

But yet, it isn’t reasonable to be at the house every single minute the nurse is, but I do try.  I just feel like I need to be there for her.

Right now, with the loss of this latest nurse, I feel completely overwhelmed, stressed out, and just very sad.   Sad that Hannah has to deal with the loss of another person that she came to like and trust, and now the roller coaster of new faces, being left alone with strangers, and separation anxiety begins again.