Lovin’ and Playin’

Bella has been so happy this week.  She has not been doing too well on the breathing side of life, but she doesn’t let that stop her.  The weather has been nuts, so she has been all kinds of colors.  Getting off the vent didn’t happen much this week.  We canceled our endocrine appointment that we have waited over six months for.  We just couldn’t take her out looking like she did.  I don’t want to be admitted for increased oxygen needs and being blue.  It’s the weather – yucky, rainy, wet, bad for kids with yucky lungs weather.  It just means she sleeps a lot.

We had the wheelchair guy come out to the house for some adjustments to her chair.  Did you know this chair folds flat?  I sure didn’t and haven’t for the 14 months we have had it.  My poor van and the abuse I have afflicted upon it.  I didn’t know whether to kiss the tech or hit him.  LOL.  Oh well, that will make our many appointments downtown a little easier.

Christmas Playing

Water Table

I filled up her tray with water.  She thought this was great fun!

By the end, she was soaked and happy and my floor was clean. 

Happy Thanksgiving!

Toys

 

Who needs toys when you’ve got old pulse ox probes and a bunch of plastic plates?

 

 

 

 

 

Cardiology Appointment

Tuesday we spent all day down town.  It took three of us to get that ECHO – the nurse to hold her arms, me to hold her legs, and Becca to do the hand motions to all of her little songs.  We were all singing and making funny sounds.  I’m sure the ECHO tech thought we were crazy!  But the cardiologist was delighted – more activity means she’s improving!  She says her heart is not the reason we are still on the vent.  Her mitral valve and tricuspid valves only have mild regurgitation now.  Her heart size is good.  She did increase her heart med by 50%.  It should help with her PH. 

We also got her synergis shot and did tons of labs.  We did a tracheal aspirate to see if we can figure out these brownish secretions.

New GJ–quite by accident

We have been having a few problems with Bell’s GJ.  So during shift change Saturday morning (two nurses plus me) we decided to check her balloon (what keeps the GJ in place).  Well, I deflated the balloon, she jumped (I guess the stoma was sore), and next thing I know milk is pouring out of her stoma.  Oops…when she jumped we pulled the whole thing out.  Oh well.  A call to the doc on call (it’s the weekend, of course) and we spent the rest of the day sitting in the ER waiting for IR to come in and place her new GJ.  We also spent the day trying to keep all doctors and nurses OUT of our room.  Sorry, but she’s fine and I don’t want ANY germs this time of year.  I just didn’t feel like training any residents today.  Once we got home, she crashed.  I didn’t see her fully awake again until this morning.  So now we have a new GJ.  That’s makes three full days we have spent downtown this week.  No wonder we are so tired!