Answers and More Questions

We got here to the hospital at 7:45 Am, just as they were wheeling Bella to her swallow study.  The Speech Pathologist showed me the video and we discussed her findings.  She does not seem to be aspirating.  Her suck is still very immature, so the OT is now coming to work with us on that.

The lung doctors just talked to me.  Her CT scan showed several abnormal findings.  She has a lot of findings consistent with DS.  She has some small cysts along the outside of her lungs.  She has fluid in her lungs.  She has some areas that are overfilled with air.  All kinds of things.  They also found a strange finding on her liver.  We’ll have to see about that.

Her arm was hugely swollen when I came in this morning.  They did an x-ray and found  a strange result in her bones.  Don’t know about that one yet.

They feel that her BPD and pulmonary hypertension can be treated clinically if we can find the right balance of fluids for Bella.  They feel that her present crisises are the result of fluid overload.  She needs to get on less oxygen (she’s on 4 liters right now) and stop having desats and then we can go home.  They are still concerned that while laying down and particularly at night, she might be aspirating (her swallow study was sitting up).  They are considering a g-tube and another procedure that tightens the sphincter muscle at the top of the stomach.  We’ll see.