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!

 

Bella Overload

Bella in her stander.  She works so hard for PT, even though it’s gotta kill that knee.  She always crashes afterwards, but I’m so proud of her.  She gives it her all. 

But shoes?  Not her fav – get these off!

And a before picture for Bella’s hair – one reason getting her hair done every morning is so important

Jessi and Bella playing.  Notice the head band makes its way to Bella’s head in the next picture. 

I love this second picture – love the smile – but look at her legs! We learned from PT this week that this is why she can sit up.  She rotates her knees inward and puts her feet out.  She is compensationing big time.  If we put her legs in a round sit, back she goes.

Who needs toys when you’ve got cords?  And look at the legs in this picture – complete 100% splits (her legs are striped in that visually stimulating pic).

Love the light pouring in behind her head.  It reminds me how blessed and protected this little one is.   And then visitors!! Grandma and Grandpa Turpin are here visiting from Iowa for the holidays!!

Adorable Bella

Bella loves the mirror!

Besitos

Besitos – little kisses

This lively performance from the baby that was gray this morning.  We love you Bella! 

ENT Visit

The doctor didn’t feel that Bella’s adenoids or tonsils needed to be removed at this time.  He did want to go in under anesthesia and clean out her ear canals and possibly place tubes, if she needs them.  I’m not sure anyone has actually seen her ear drums because of those teeny, tiny Down syndrome ear canals – not that everyone hasn’t tried.  While she is under, pulmonology is going to do a DL&B or direct laryngoscopy bronchoscopy.  We are still working to schedule that because we have to get two doctors together in the same room at the same time – fun.  The doctor is hoping for some answers to why her lungs require so much assistance.  We’ll see.