Wednesday, October 29, 2014

Figuratively Speaking

The morning of Josephine's cath exam was one filled with activity.  Josephine wasn't allowed to have formula after midnight and while we were permitted to give her Pedialyte (which surprisingly, she loved), even that had to be cut off by 4:30 a.m.  Despite being what I would imagine was ravenously hungry, Josephine was in fairly good spirits.  We dressed her in her oh-so-stylish bright pink Dancing Queen onesie paired with her 80s throwback leg warmers adorned with pink prancing ponies, and after a quick run to Starbucks for some morning "fuel", headed to the hospital.


The check-in process was mostly painless.  We spent a few minutes in the Inpatient Admitting waiting area, giggling as Josephine marveled at the ceiling tiles and overhead lights.  (This kid is fascinated by the most mundane things.  :) )  After a short time, we were called to the desk where we signed a pile of releases and were freed to go upstairs.

The unit was just as we had remembered.  Same reception desk (minus the desk nazi who guarded the entrance to the CVICU,) Same twinkle lights illuminating the waiting room.  Same worn, but moderately comfy recliners.  Same stillness punctuated every so often by a passing staff member.  We had spent far too long here during Josephine's first stay, and it began to dawn on us that our second stay was edging closer by the day.

While we were waiting for the cath team to prepare, one of Josephine's favorite nurses happened to walk by.  From the darkness of the waiting area, I waved to her.  At first I don't believe she fully recognized us...man, woman, baby...wait a second, that's Josephine!  "No freakin' way!"  she exclaimed as she pulled open the waiting room doors and bounded over to see our much bigger, much healthier-looking little girl.  After a couple quick hugs and some reveling about how much Josephine had grown since going home, nurse Kim excused herself so she could get back to her duties.


A few minutes later, a member of the cath team came out to escort us back to the cath lab, which was deep within the maze of hallways behind the ICU.  Perhaps I was in a bit of denial about how this would all go.  After all, it seemed to me that a cath wasn't surgery exactly.  Just a procedure.  Take a little blood. Snap a few pictures.  And we're out.  The paperwork, however, made it pretty clear this was a serious medical procedure that came with a very specific set of risks.  Michael and I signed each consent, then met briefly with the anesthesiologist and cath doctor - Dr. Nugent, one of our favorites from Josephine's first stay.  We cuddled and kissed our sweet girl, then passed her off to the nurse to be taken back to the OR.

Back to the waiting room we went.  While I'd like to say I was able to get a few minutes rest, that simply wasn't meant to be.  After about an hour, we were advised that Josephine had been put to sleep and was doing well.  Dr. Nugent was just about to begin.  as we waited, other parents with other kids came and went.  A dad snoozed quietly in the corner recliner.  A mom nearby watched Let's Make a Deal.  We sat, glancing occasionally at the T.V., surfing the internet or catching up on Facebook posts we'd missed over the past several days.  Finally, Dr. Nugent appeared at the doors to the waiting room.  "Let's go to the consult room," he said, quickly reversing his suggestion when he noticed that the entire room, save Michael and I, had cleared.  I had confidence in Dr. Nugent...I trusted him.  But in the back of my mind I harbored some fear about what he was about to tell us.  "Well," he began, "I don't want to call it unique or bizarre...but it's bizarre."  (Words, I can assure you, are not necessarily the ones you want to hear your child's doctor use to describe her condition.)  He then pulled out pictures taken during the procedure which showed that Josephine's shunt had visibly narrowed on one end.  (We had learned during Josephine's first stay that full occlusion of the shunt was considered a catastrophic event.  Game over.)  Yet Josephine was fine. Her stats had been in the 80s.  Her color was a soft pink.  Her pulses were strong.  She was bright and alert and gaining weight.  We were even well on our way to removing the feeding tube.

As it turns out, Josephine's body had spontaneously developed two
collateral vessels leading off of her heart.  During the first surgery, the doctors had implanted an artificial shunt to keep blood flowing to her lungs for oxygenation.  Somehow, in the weeks since leaving the hospital, her body had managed to grow two more shunt-like structures.  Dr. Nugent punctuated the gravity of the situation by finally commenting, "Without these two collaterals, she would have been as blue as a squid a month ago."

*   *   *
Josephine has been very stable, very safe and very active over the past two weeks.  We're also pleased to say that she is now ng tube-free!  Dr. Ikemba, her cardiologist, gave us the O.K. to attempt exclusive bottle-feeding the next time she pulled out her tube.  True to form, Josephine had that task tackled in about a week's time.

Tomorrow, we're scheduled to take Josephine in for her second surgery, known as the Glenn.  Essentially, this will be the true game changer during which they remove the shunt and reroute her existing plumbing so that blood from her upper body passively flows down to her lungs where it will be oxygenated and sent back to the heart and pumped to her body by her one good ventricle.  Although it is still major open heart surgery, they tell us recovery time is typically significantly shorter than that of the first procedure.  We're hoping an praying that's true.


No comments:

Post a Comment