Friday, December 10, 2010

Wakeup Call

Perhaps lulled into a false sense of security by three-plus months of encouraging doctors' visits, I didn't think much about Gus' visit for x-rays this past Tuesday. G-man has been consistently impressing his cardiologist, endocrinologist, primary care physician, physical therapist, and basically anyone related to him by blood, marriage, and friendship. Granted, he's had a loud kind of breathing sound since he was born, but Gus has been growing at a fine pace and his personality has been more animated than ever.

The quiet hero of our family is definitely Michelle. Both of us have amazingly compassionate employers and supervisors, but my job keeps me on a random road schedule that is difficult to predict - so our matriarch somehow handles every single medical appointment for the kids, while balancing a full-time job. Fortunately, we both went to Gus' recent consult at the Children's Hospital DS Clinic, so I was well aware of the reasons behind the referral to have him swallow barium with his formula. They wanted to be sure he was not aspirating when he ate. In other words, was formula getting into his lungs when he swallowed?

I knew the outcome of the swallowing study the second I heard Michelle's voice when she called. "Okay, temporary setback," I thought. So we just have to thicken his formula. No big deal. Wrong. He would return as an in-patient on Wednesday. Here we go again.

It's funny how easy it was for me to forget about all of the potential complications that could arise due to Gus having DS. After so many weeks of development that paralleled pretty much all of our "typical" experiences with Greta's first four months, I became naively confident that no other medical issues would arise with our little superstar. But there I was, packing a bag and panicking that I might forget some critical piece of clothing or toy before we left for who knows how long.

Of course, I wasn't upset in any way towards the G-man at any time whatsoever. But the unexpected news about another potential obstacle to our quest for Gus to have a clean bill of health alarmed me. What was all this business about feeding tubes? Our little guy was fine. These doctors gotta be overreacting, right? I was at stage one already: denial.

And, frankly, the interruption to our family's daily routine frustrated me. Why Gus? Why us? Hasn't he and we been through enough already? Who would watch Gigi while we were gone? Both Shell and I couldn't have had busier weeks with our jobs. Plus, we were re-entering the hospital world where the promptness of scheduled visits by doctors were as reliable as arrival times by an MBTA bus or subway. Fucking A, man. Now I was at stage two: the self-pity percolated.

Then, we got to the hospital. I looked around us. Worried and caring parents abounded with children of all ages enduring a myriad of disorders and illnesses that spanned a vast range of severity. Reality check. Forget about the small stuff that was seemingly important. Focus on Gus. Listen to the doctors. Ask probing questions. Be sure to understand what they're saying. Make educated decisions. Be a good father and a strong partner to my wife.

After our admission, we immediately became reminded of why Children's Hospital is so great: the nursing staff. Shannon and Ann were yet more all stars in the Hall of Fame cast that has cared for the G-man during both of his stays at Children's. And, to their credit, the doctors seemed to be appearing much more frequently than I unfairly stereotyped. Everybody - literally - was again phenomenal. Very empathetic. Extremely patient. Totally assuring.

As for the cold facts of Gus' situation, Shell and I have different understandings of what is causing the aspiration. Without dispute, he has laryngomalacia - basically, a narrowing in the passage between his mouth and stomach. Doctors have also said he has a floppy airway. (I think they mean the same thing. Shell thinks they are two different issues.) Irregardless, somewhere in Gus' airway, it apparently allows formula into the lungs when it should only be air. This creates a higher risk of pneumonia and long-term lung damage, among others. Consequently, he has a nasogastric (NG) tube for the indefinite future.

The NG tube is a small tube that goes through Gus' nose into his stomach that gets hooked up to a pump for every feeding he has (about 5 or 6 a day.) Fortunately, we can feed him one ounce of formula immediately before activating the pump so he won't forget his eating reflexes. The good news about the NG: it's relatively easy to put in and pull out. Plus, other than the annoyance of its placement through the nose, the tube isn't anchoring into anything internal or external.

The bad news about the NG: it's relatively easy to pull out. Vegas already posted an over-under line for Greta's first successful removal of the NG at one week. I'll take the under.

Not surprisingly, Gus' mom is already a champ at installing the NG. After installing one for practice, Shell got called into duty in the middle of Night 2 when Gus yanked it out in his sleep. But what else would you expect from a mom who, although she trusts dad's abilities entirely, insists on sleeping over to be present "in case anything happens"?

There is a possibility that the NG tube could be replaced by a gastrostomy tube (G tube), which goes directly into his stomach through his belly, but for the time being he seems to be handling the NG okay. We'll cross that bridge when we come to it.

We got the green light to go home on Friday and rejoin Miss Greta where she was being thoroughly spoiled by her Mimi, who came to the rescue on extremely short notice. As was the case in July, everything worked out, just not in the way we originally expected.

Triumphantly, Gus, Shell, and I exited through the lobby into the chilly frenzy of pedestrians and traffic of Longwood Ave. As we passed by Santa Claus and an elf standing idly on the sidewalk, I nodded with a smile whereupon Saint Nick extended his hand and said, "Here you go, dad. Happy Holidays." Expecting to see a coupon for 10% off at Dunkin's or the like, I was shocked to find what appeared to be a $50 bill in my hand. By the time I inspected the gift for authenticity (it's bona fide) and turned back to thank the philanthropists, they were gone.

While astounded to be the recipient of such an unexpectedly generous gift, we were much more grateful to be going home with our still perfect baby. Happy Holidays, everybody!


Shannon said...

So sad for Gus having to endure the NG tube. Crossing fingers and saying prayers that he outgrows the laryngomalacia very soon. He's an absolute champ no matter what. Love and strength to all of you.

Ann Haaland said...

As always, you guys rally and impress and awe the rest of us simple folk. Hugs to all of you.

Scott said...

Hang in there, guys. Glad to here he is alright.