Having a sick kid isn't much fun.
The hours stink. Your social life is a memory. Your diet goes to hell. You get so tired that crying seems like too much work. Having normal conversations with normal people about normal things is practically impossible, and the family waiting room in the Neonatal ICU doesn't even have ESPN.
But the worst thing, the absolute worst, is watching someone you love so much suffer and not being able to do a thing about it.
Will has had a terrible go of it the last few weeks. He weathered some goofs and snafus with ease in mid-December and was moving toward emerging off the ventilator. Then he crashed. First, his levels got worse. Then, his breathing seemed more labored. Now, he's spitting up a mucusy goo with alarming regularity.
Lately, Will seems like he's in a lot of pain. Sometimes, he cries so much he seems inconsolable. It's impossible to hear because he has a tube down his throat, but you see it from his tortured eyes and tears. He doesn't sleep as much. We think it's because he spits up so much his bed now needs multiple changes. His oxygen intake is crashing with greater frequency, sounding scary alarms.
Doctors aren't sure what's happening. Technically, Will shouldn't have anything to spit up. He has tubes that go directly into his intestines, so his stomach should be empty. It's a phenomenon one doctor described as "fascinating."
We consider it excruciating. You wish you could trade places with him, breathe for him, do anything other than to sit and watch your innocent, beautiful baby suffer.
Hopefully, help is on the way. After much cajoling (from us) and hestitation (from the docs), Will is scheduled to undergo surgery for about 2 1/2 hours tomorrow at 9:15 a.m.
Surgeons will fix the pyloric stenosis by opening a valve (the pyloris) between the stomach and intestines that may have closed, causing projectile vomiting. They'll also perform a procedure called fundoplication, which closes a valve in the esophagus and makes it impossible to vomit.
While they're there, surgeons will add a feeding tube that goes into his stomach and out his tummy to replace the obnoxious line that now snakes from his nose into his intestines. They'll also run a central line into his heart so they no longer have to poke him 15 times to try to establish an IV.
It's an awful lot for such a little guy. Tomorrow's not going to be much fun. Doctors warn it may not fix much. We still hopeful that the operations can make Will's life easier and maybe -- just maybe -- set him back on a course toward getting off that old nemisis, the ventilator, and breathing on his own.