Maggie is doing pretty well since she was discharged last sunday.  Her energy is decent and her coloring is pretty good.  She had 2 dr. appointments this past week and received good reports both times!  Praise God!  However, she will remain on the very low fat diet for 5 more weeks.  We expect her cardiologist, Dr. Sharkey, to reduce her diuretics and lasix at her appointment on tuesday.  Yes, we have another appointment.  I feel like life is back to when she was a newborn.  We haven't had this many dr. appointments since then.  Oh well, we're surviving. 

She is tolerating the diet pretty well.  She doesn't eat as many snacks as before, but she eats pretty decent meals.  I am so afraid that she's going to get tired of it before the 5 weeks is over.  She has lost a pound in the last 2 weeks, I'm certain that we'll see her lose more than that before this is over.  She just doesn't take in enough calories to maintain her weight.  If an adult cut their fat intake back as much as she has, then they would lose weight rather quickly.  Unfortunately, she didn't have any weight in reserve either. 

Since surgery, Maggie has also been struggling some with her reflux again… i.e. puking.  If she gags the smallest bit on something, then she loses everything.  It is so frustrating when we are working so hard to get her to eat right now.  I am hoping this improves with time and that we don't have to take any further action. 

I posted earlier about her lower oxygen saturations.  Maggie was discharged after surgery with sats a decent amount lower than the doctors would like to see.  They would like to see her in the mid 90's and she is in the upper 80's to low 90's.  Her cardiologist believes that this is due to some AVM's in her lungs (collateral vessels that allow some blood to bypass the oxygenation process).  Dr. Sharkey said we would wait to treat these until they became problematic… i.e shortness of breath and lower energy.  Well, I think we're there.  I am going to talk to Dr. Sharkey about this on tuesday.  I'm not satisfied with her energy level or breathing.  We'll see what she says.  Treatment of these would require anothe cardiac catheterization.  😦

So, that's where we are.  Maggie's personality is pretty much back to its' normal self and for that we are very thankful.

Advertisements