Special Needs Mommy

I am amazed at what I've learned as the mother of a disabled child.  I am the one person who knows Brianna's entire medical history (by dates) by heart.  I can recite the progress she's made, the colds she's had, the surgeries, the therapies...and I know exactly how we like her to be cared for.   We want Brianna to be clean, stimulated, safe, happy, and loved.  We have a detailed schedule for her.  I don't think her care is complicated but things need to be done on time or it is easy to get off track.

It gets frustrating at times.  We have had several nurses in the 7 months she's been home and each time a new one starts...it's a whole learning curve again.  I get upset because they are making mistakes that affect my baby. 

The other day, I came home to find that the brand new nurse had not cut her trach ties to size but put them on her straight out of the package after her bath.  For those of you unfamiliar with trach ties, they need to be tight enough so that only one finger can slip underneath.  Otherwise, you run the risk of the trach falling out or being pulled out.  This is life-threatening.  When I got home that day, my entire hand and then some could have slipped under there.  The trach was hanging out and making a whoosh sound.   Of course, I wasn't home when the nurse was there because I had taken Hailey to dance class.  So now I have to confront our new nurse tomorrow - one week later - because she only works Wednesdays.  I don't like to do that...I like to address things at the time they happen. 

I asked today's nurse how much Brianna sat and played today.  She informed me that she sat in a chair for 35 minutes.  She was actually proud of that, because she thought she was only required to put her in a chair for 20 minutes.  I could not believe what I was hearing.  We were gone for 10.5 hours and she laid around for 10 hours?  I calmly explained to the nurse that the 20 minute guidance was for when she was 6 months old and learning to sit.  Additionally, the guidance said 20 minutes, at least 3 times during the day.  I told her that Brianna is older and can sit up for much longer times...until she asks to move or do something else in fact.  It is better for her muscle development to be sitting than laying down all day long. 

Another nurse was changing the settings on the baby's oximeter alarm so that it didn't beep at 90% but would beep at 86%.  When confronted, she explained that you need to "give the baby a couple of percents" because 90% is too strict.  We explained that her requirement is above 93%, so it already is a few lower than her minimum.  She replied lots of families set it at 86% or turn it off completely when the baby is awake.  She didn't last long...

Sometimes I wish that I didn't have to be so diligent in watching everyone else's work.  These are trained nurses, LPNs and RNs.  I am an accountant for goodness' sake. 

But I am a mother.  And I will always protect my babies.