Long Day, Long Post

Poor Bella – they won’t feed her – and she is hungry.  But the last thing she needs is more formula in her lungs, so she goes hungry for now.  She alternates between being extremely fussy or talking to lady bug.  She is probably telling her how horrible we all are not to feed her!

The doctor doesn’t trust her, so she is treating her very conservatively.  Bella is down to 1/2 a liter of oxygen and sating well.  She still has nasal drainage and lots of gunk that she is coughing up.  She still has the dry smoker’s cough after the gunky coughs.  The RT and I decided it’s probably just irritation.

The doctor feels Bella will have the GJ for a couple of years and then they’ll probably try the radical approach to the fundo (the 2nd image in my notes to self from yesterday) where she will create a new fundus to wrap around the esophagus.  The doctor says it’s not ideal, but it’s what we’ve got at this point.  Poor Bell.  The sad thing to me is that is no food for the next two to three years unless we get a miracle and she outgrows this on her own.  That means no birthday cake, no ice cream, no yummy cookies….but we will have Bella and that’s good.

Bella’s EKG: She hates it when they take all of the stickers off.  Sweet thing.  The nice thing about being vent dependent is that a lot of the tests can come to the bed side – so very nice!

The doctor did say that the nystamus that increases with therapy is because of muscle weakness – one of the joys of DS.  When she is tired or trying to focus on other things, it’ll get worse.  As she ages and gets stronger it should go away.  Great!  It’s crazy – I forget Bella even has Down syndrome I’m so focused on other things.

Super Duper Fantastic News!  My Mom bought Bella the Nap Nanny!  I can’t believe it!  I am so grateful – it will help so much.  And I won’t have to worry so much when she is sleeping!  Thank you Mama!  It’s August and back to school time.  With four kids needing school supplies….it just wasn't in the budget.  We even had a garage sale last Friday (yes, it was 100 degrees outside) to try and raise money for it.  $21 later…..have I ever mentioned how much I hate garage sales?  :)  So, thank you Mama.  Truly!

Bella had her echo – I haven’t gotten the report yet, but I’m not worried about her heart right now.  It’ll tell us about her pressures though, so that will be helpful.  She also had OT and PT.  She has had a busy day!  Look at how well she is using her hands to reach for toys!

 

I am more determined than ever with this reflux to get her sitting up.

 

 

 

 

 

 

We are back from having her GJ tube placed.  It is finished. As soon as her formula is prepped, she can eat.  This is a huge change for us, but it’s what is best for Bell.  It looks very simliar to the mickey – except there is a 3rd port on the button.  So now we have access to her tummy or her small intestines.  I am hoping this will help.