Odds and ends

Been a while since I last posted . . .

Zachary now weighs 14 pounds.  He is gaining weight, but rather slowly.  His Z-score (yep, that's really what it's called), or how far his weight is from the mean for kids his age, is -3.8, which is up from the -4.2 several weeks earlier.  Not sure I really understand what that all means.  Just know that when they graph his weight he's not even on the graph. 

He's off the ventilator completely during the daytime now.  He still uses the vent at night and requires oxygen nearly continuously, but the fact that he can breathe on his own for long stretches is good news for sure.  And as Erin marvels, we're not sure how a kid with such bad lungs has as much energy as he does.  He squirms and wiggles nonstop and jumps in his bouncy contraption for hours.  We are expecting him to be admitted to the hospital sometime in the next month for a sleep study to determine whether he can keep his lungs inflated and properly oxygenate his blood at night without the pressure provided by the vent. 

Got some great news at the last pulmonology appointment.  They told us he could stop wearing the apnea monitor at night.  That's the machine that shrieks when the heart stops or breathing ceases. It is great for him because it necessitated wearing a belt around his chest to hold electrodes in place.  And good for us since the docs don't seem concerned that he might randomly stop breathing at night.   

His feedings aren't going as well, unfortunately.  He was taking most or all of his bottles by mouth during the day but now he is lucky to finish half. We give the remainder through his button (the feeding tube in his stomach) when he can't down the whole thing.  Also been trying to get him to taste people food like bananas and pears and applesauce.  He's not a big fan, though he'll take a few small tastes occasionally.  Looks like this feeding thing is going to take some work.

Mommy and daddy are doing well.  We are tired most of the time but thankful that our little munchkin man is doing so well and keeping us on our toes.  The nursing situation had been relatively stable the past month or so, but that's going to change soon when we lose our primary day nurse and our primary night nurse takes some time off.  Looking forward to the holidays though. 

That's all for now.