The Plan

Christy and Stephen really wanted a plan, and now they have one. 

This morning was really difficult.  Sydney started off the day on two liters of oxygen.  She was having lots of desats, so Christy tried to get her out of bed and walking because that's the best way to open up her lungs and get them on the right path.  Yesterday she managed two long walks.  Today she made it less than fifteen feet and then melted down, sitting down and refusing to move.  She was so panicked that she earned herself a pulmonary exam right in the middle of the hallway.  Her sats at that moment were in the 30s.

When they got Sydney settled back in her bed, she required four liters of oxygen AND blow by in order to recover back in to the 60s.  After a long nap, she seemed to stabilize in the 70s.  She's still on four liters of oxygen, but her personality has rallied and she's currently working on an art project with Daddy. 

Syd's pacemaker was "interrogated" this morning, and turned down a little bit because she was having some runs in to the 130s when she was up and moving around (walking to the bathroom).  She was on a medicine (atenalol) to lower her natural heart rate so it wouldn't compete with the pacemaker, but the doctors have decided to discontinue it because it seems to be impacting Syd's personality ~ making her really tired and less active.  It could also be that the atenalol is restricting her airways or making some existing problem worse.  

Her doctors now believe that she has pulmonary edema based on wet lung sounds, so the have again increased her lasix and adding back in another diuretic (aldacton).  They will take labs in the morning and continue to assess her status to ensure that she doesn't end up dry.  We are hoping that the answer is getting all the fluid out of her system.  They are also increasing her sildenofil (Viagra) with the hopes that alleviating any pressure in her lungs will reduce shunting across her fenestration and increase her sats.   

Sydney is also going to start back up on her nebs, this time with atrovent.  She was on atrovent a few weeks ago when she started having her blue episodes.  Hopefully it will help clear up some of her pulmonary issues. 

We are also waiting for Dr. Lim to come back in town.  He is the interventional cardiologist who did her cath.  We are waiting for his opinion on whether or not he is comfortable going back in and attempting to close her fenestration.  We'd at least like a target date for closing the fenestration, especially since they are discussing the possibility of Sydney going home on oxygen. 

Well, that's it for now.  It's been a rough couple of days and Christy and Stephen are exhausted (and so is Sydney).  Please keep the prayers coming, they are so critical ~ not just for Sydney, but also for Christy and Stephen's spirits. 

Thanks,
Josie