Busy couple months ahead

There's a lot going to be happening over the next couple months on the medical front.

Tomorrow (well, today actually since it's 3:01 a.m.) we're visiting the surgeon who put in the trach to evaluate how things are going with that.  The bleeding we saw a few months back has all but stopped, though we did get a trickle or two earlier today.  Seems like whatever was causing it has abated.  We've had a few issues with granulomas, or skin growths, around his stoma (the hole in his neck).  But they don't seem to be causing too much discomfort. 

Next week we're seeing the pulmonologist.  We have good news to report in that Zachary has been weaned from supplemental oxygen when he's awake and wears his speaking valve without problem.  He still gets O2 when he naps and overnight while he's on the ventilator.  Next big event is a repeat sleep study in June to see if we can start lessening the time he's on the vent at night.

The following week it's off to the pediatrician for his 18-month checkup.  Can you believe that?  In some ways it seems like he was born just yesterday while in others it feels like he was born years ago.  I think I've aged ten years in the past 18 months.  Look like it too.

After that we'll be seeing his new cardiologist, who is monitoring his pulmonary hypertension.  He wants to do an ultrasound of his neck because he thinks he may be at increased risk for blood clots based on some enlarged veins in his neck and chest.  We'll keep you posted on that.  And he'll do an echocardiogram of his heart to see if there's been any improvement with the PH and if he wants to put him on a regimen of, believe it or not, Viagra!  The little blue pills help open blood vessels in the lungs, which lower pressures and results in less strain on the heart.  I'll be sure to ask what to do about an erection lasting longer than four hours.  I wonder if he'll think that's funny?

And starting in May, the dreaded tube wean.  I'll do a separate post on that as it nears, but basically, we'll have some feeding and nutrition experts with us every day to help us try to stop feeding Z-man liquids through his stomach tube and instead feed him solely solids by mouth.  From what we've heard it can be a traumatic experience for all involved, since the plan is not to give him his formula if he refuses to eat by mouth.  The idea is that eventually he'll get hungry enough to eat whatever we give him.  We'll see.

Not a lot of rest for the weary, but hopefully good news and continued improvement.