Saturday, Sleep, Sinus, and Surgery

Time for a celebration, Ella slept in all the way until 5am.    That doesn’t sound like much but we’ll take it over the 2:30am wake up call from the night before.  I took her for a bit, before Nina and Ella went to the hospital and let me and my sinus infection sleep for a few more hours.

We finally ventured out for a bit and took the subway train to the Boston Common area and we saw the cemetery where some of America’s greats are buried.  Sam Adams, John Hancock, Mother Goose, and Paul Revere.

.. and now for a medical update from Dr. Nina Steadman.

A little about the condition that Ariana is in… 

Currently, she looks like the guy from the Operation game, she has a drainage tube on her right side, a drainage tube on her left side, a GJ tube in her stomach and a ventilator tube going into her lungs.  (The catheter has been removed – whew!)  She also has a broviac in her right thigh and an IV on each wrist.  After her first surgery, she ended up with chylothorax – leaking of the thoracic duct which caused major swelling of her upper body.  The drainage tube on her right side was put in place to drain the lymphatic fluid.  Today the lymphatic fluid was cloudy and tested positive for triglycerides.  And what does that mean, you ask???  Sadly, it means that they have stopped feeding her breast milk because of the fat content.  She is back on TPN until tomorrow morning when they will evaluate what to feed her in the mean time.

The paralytics were lifted from Ariana, so she started to open her eyes and move a little.   It’s so nice to see her peepers again.  She’s such a sweetheart and a trooper. 

BREAKING NEWS!!  Surgery #6 has been scheduled for Thursday, November 10.  For this Foker Procedure, they will attach the sutures to both ends of the esophagus and bring them out to the left side to apply tension daily for the next 2-3 weeks until the ends are long enough to be attached.   She will be paralyzed the whole time during this process which will be tough for us but it’s necessary so that the sutures don’t come undone.

Mattina