whew . . .

We're back (both from the hospital and to the blog).  We've actually been home from the hospital for a few days now but I've been too busy and too tired to post.

A lot has happened since last weekend.  Zachary was admitted to the hospital on Sunday after showing signs of congestive heart failure because of the flood of blood that was swamping his heart, a result of the artery that had connected to a vein near his tiny ticker. 

We didn't really know how sick he was until after surgery when the docs told us that his heart eventually would have stopped working from fatigue had they not fixed the problem.  One of the surgeons actually said "I'm not saying it would have happened in the next couple days, but it would have happened eventually."  Ok then.

The near four hour procedure was rough for us all.  They placed two metal coils and some metal wire (actually nickel and titanium to be exact) in the connection between the artery and vein to make the blood flow where it's supposed to.  Upon doing so they said his heart rate dropped back to near normal almost immediately and the blood that had been pooling under his eye as a result of the venous congestion started dissipating. 

The waiting was the hard part for us.  We got updates about every hour from one of the nurses who was assisting with the procedures.  It took so long because they also did a heart catheterization to measure the pressure in his ventricles (which was just slightly elevated) and checked to see whether he had any additional arteriovenous abnormalities in his lungs, which he thankfully did not.

He rested comfortably for the first few hours after surgery, thanks to some sedatives and pain-killers.  Then he woke up and was not too happy.  The docs thought it was a hangover from the anesthesia since he was under a long time for such a little guy. Had a very rough night that night with a really high heart rate and some vomiting, but he calmed down over the next couple days.

We're very happy obviously to have caught the problem in time.  But a test before he was discharged showed there was some residual flow of blood around the coils and wires that are supposed to stop that from happening.  Hoping that will resolve itself or he may need to go back in a month or so to have some more metal inserted to dam-up the vessels.

The other unfortunate occurrence is that he hasn't eaten much by mouth since the surgery.  Not sure why but we're going to be devastated if he stops eating orally after we spent to much time weaning him from his feeding tube, which his pulmonologist wants us to start using again, at least overnight.  He labels him as "failure to thrive," which is a sort of catch-all term for kids who aren't gaining weight and getting enough nutrition. 

We've worked hard getting him where he is, or was pre-surgery, and will do everything we can to avoid tube feeds with artificial formula, but we'll need to fatten him up soon or any weaning from the ventilator, and subsequent removal of the trach, will be delayed.  But the consensus seems to be that fixing the blood flow problem may help his overall health, allowing him to breathe easier, burn fewer calories doing so, and perhaps gain weight faster.  Let's hope!

Things went well, then, everything considered.  Whew . . .