Sunday, March 16, 2008

Stupid intuition

Every once in a while, intuition kicks in and whispers in your ear: “Life is about to turn to Hell, buddy. Pay close attention.”

So I did. There's Mo, holding Hope's finger as she's wrapped in an iron blanket and led between two massive industrial cameras. "Ain't Too Proud to Beg" is on the radio and that nice technician who seemed so chatty five minutes ago becomes very quiet as the test concludes.

Intuition is practically screaming now: "The technician knows how bad it is. That's why she's not saying anything. Hope is in rough shape. She needs surgery."

Stupid intuition. You blew it again. Hope is fine. As is her wont, she once again exceeded our worst fears and continues to confound her perplexed parents.

Hope's utter unpredictability -- great one week, terrible the next, acing tests we think she'll fail and vice versa -- may be maddening. But it's also quite endearing. Like many great artists, Hope is inscrutable. The minute she thinks you have her pegged -- boom -- she'll zing you for having the audacity of presuming she's that easy to figure out.

The latest moment came amid tests during 50-hour hospital stay that was alternately stressful and peaceful, exhausting and restful, interesting and dull and worthwhile and worthless.

We arrived home late Saturday afternoon with the exact same plan we had before setting foot in the hospital: Hope is now on eensy amounts of supplemental oxygen piped into her nose through a cannula while she sleeps. It's supposed to help her apnea, and so far, so good.

But getting there was interesting. The carefully mapped plan for the hospital of weaning her to increasingly smaller flows of oxygen and testing whether it makes her lazy quickly faded. She slept on oxygen Thursday night. The next morning, the attending physician walked in and said, "Well, she didn't have any episodes. I guess it works. What do you want to do? Wanna leave?"

The plan in tatters, we opted for another night of observation. Since we had the time, we also had Hope undergo a gastric emptying test -- a two-day affair scheduled to start Wednesday -- to measure how much food she spits up and whether some spills into her lungs.

That test, in the bowels of Beaumont Hospital, consisted of feeding Hope milk laced with a small amount of harmless radioactive material. Similar to a stress test, she was then wheeled under two cameras that took photos of the material every 60 seconds for an hour. It traced how long it took Hope to digest her food, how much was refluxing back up her esophagus and whether any of it was getting into her lungs or aspirating.

The results were a big deal. If she was aspirating, she would have to undergo a surgery to shut off her esophagus. A feeding tube would be installed at the same time. But if the test went well, it's full-steam ahead to put tubes in her ears and trim some of her larynx.

Despite the nagging, ominous warnings of my intuition, the results were tame: Hope has some reflux that comes back about a third of the way up her esophagus; half the contents of her stomach empties in about an hour; and milk doesn't get into her lungs.

Translation: Normal.

Prepared for the worst, we hadn't even considered the possibility. A day later, it's still confusing. For three months, we've based her care on the knowledge she has severe reflux. Some days, she would spit up 4 times if we didn't hold her perfectly upright. Heck, further evidence this morning forced me to change my shirt -- and that doesn't happen often.

"That little girl is becoming pretty good at making liars out of us," Mo said after the test.

If she is, she's making us happy liars. The Inscrutable Kid rides again.


Karen said...

Glad to hear that the gastric emptying study went well. Good luck with the upcoming surgery for the ear tubes and the larynx.

I will say that needing surgery for severe reflux isn't the end of the world. Our son Ben had the Nissen/g-tube procedure you described at 5 months old, and it really made a positive difference in his (and our) quality of life. All the same, it's good that Hope doesn't need it.

Misty said...

i am so glad to hear that things turned out better than expected!! send some of that false intuition my way will ya??!! LOL! we finally saw the ear doc today....we are facing mason being sedated for a cat scan and hearing tests...i am not looking forward to this, but i want my little one to get hearing aids!! i can't wait to read how hope does!

Anonymous said...

I ended up deciding when we had little ones that parental intuition didn't exist. Parenting is sure great training in flexibility, though!

Glad things look good. It doesn't change the oddities of the day-to-day care, but must ease the concern about the potential Biggies.

Now to find Pippi some Long stockings!!

Love you --

Grandma K.

Brooklyn Salt said...

Saying, "this is good news," is such an understatement, but I'm at a loss for words (which is surprising, as you know).