Home!

I think it is safe to say that all of the Leclaires are quite happy to be home.  We walked in the door about 30 minutes ago.  We are also quite tired, so I'm going to keep this blog short.  I posted below a few pictures taken before the cath that I couldn't upload to my computer until now.

Thanks again for all of your kind texts, e-mails, blogs, phone calls, and good thoughts!  We are lucky to have so many people taking such wonderful care of us.

Sam, or Mrs. Roper?

A very hungry Sam waiting for the cath to begin

One of our few family portraits!

Happy to be reunited with his tunes

All Done

Sam's cath is over!  He did great.  Everything went pretty much as expected, and the doctor seemed pretty happy with Sam's overall heart function.  While his left pulmonary artery is still stubbornly small, Sam has good pressures and a large right pulmonary artery.  According the cath doctor, Sam is a likely candidate for the Fontan surgery--the third and hopefully final major open-heart surgery.  Also, the cath doctor is hoping that Sam will not need further intervention until the Fontan.

Here is a picture from the cath--you can see the difference in size between the left and right pulmonary arteries (dyed for the cath):

What is perhaps most alarming about this picture is that there appears to be a small, dark swan swimming around in Sam's upper ribcage.  Hmm.

Because of the discrepancy between his left and right pulmonary arteries, however, Sam will likely experience some complications after his Fontan and have a lengthy hospital stay (at least a month), but he is squarely in the candidate range.  He just needs to keep growing and gain about five more pounds.  In the world of hypoplastic left heart syndrome, this is what we call cautiously optimistic news.  My favorite moment with the doctor, though, was when he told us that Sam is a "very popular guy around here."  He is a pretty popular guy with us, too.

Right now, Sam is playing with his portable DVD player.  He just sucked down some Pediasure and seems to be feeling alright, though a bit out of it.  His many "friends" in the cardiac progressive care unit were quite excited to see him, and even more excited that he managed to stay out of the hospital for so long. With a little luck, in a couple of hours he'll snuggle up with Wubbie, get a good night's sleep, and go home tomorrow so he can get back to his favorite hobby: sitting on the cat.

Thank you for all of your prayers, wishes, and good thoughts.

Late, but finally on our way

Well, after three and half very long hours of entertaining a very hungry and dehydrated one-and-a-half-year-old in a tiny hospital room, the cath is finally underway!  Here is the news we have so far: They are going to balloon both the left and right pulmonary arteries because both are narrow, but they are not going to coil off any collateral veins. Here are a few pics of the fun and excitement of the waiting room:

Wild rides in the stroller while waiting for the cath

Being entertained by Smithy

Jason and I in our HAZMAT suits--ready for Halloween!

Jason and Jeff snuggling up with the crossword

Hello?

Jason was rummaging obsessively through our lower kitchen cabinets.  “So I’ve looked everywhere,” he said, “and I still can’t find it.  I looked in the T.V. cabinet, in his toy baskets--” And here I stopped him, because I always like to be the one who really uncovers the mystery.  While Jason did appear earnest in his search for our missing home phone, I’m the one always paying attention to where Sam’s little hands hide things.  When Sam walks around, for example, shaking my green tea K-cups, I take note of whether they wind up in my measuring cups, under the couch, or, his personal favorite--in the chip and dip fiestaware.

“Did you look in the shoe basket?” I asked, and he looked at me, saying, “The shoe basket, the book basket, the hallway closet, although I don’t know how he could actually open that, under the kitchen sink, under the bathroom sink.  I can’t think of any other place he could have possibly hidden the phone.”  I had to admit that he had been thorough in his investigation.

“Can you think of any other places?” he asked, and again, I had to admit that I couldn’t.

At that moment, our primary suspect came stomping through the kitchen, holding the TV remote control to his ear and pretending it was a phone.  Babbling in some elfish language, he seemed pretty happy with whomever was on the other line of this imaginary conversation.  Then, without looking up at Jason or me, Sam marched over to the trash cabinet, opened it up, perfunctorily dumped the remote control inside, closed the door, and wobbled away humming “Twinkle Twinkle Little Star.”

“Do you think that’s what happened to our phone?” I asked Jason.

“Could be,” he said, rubbing his jaw.  “Could be.”  Trash day was yesterday, and the phone had been missing for a week.

I watched Sam suspiciously as he picked up my cell phone from the coffee table.  Just two weeks ago, he figured out how to unlock my phone and sent out his very first text message.  It was basically the isolated letter “q” sent in about eight consecutive texts to a very understanding man in our English department.


Luckily, Sam had only succeeded in absconding with the home phone, not our cell phones. This was especially important this week since we had been waiting for a phone call from Sam’s cardiologist, Dr. Buckvold.  I still feel shy about calling her “Shannon,” even though that’s how she introduces herself when she calls and how she signs her e-mails.  She just seems like far too important of a person to be called by her first name.

We were waiting for her to call and let us know if Sam’s cold was going to be a major issue in his upcoming heart catheterization, which was now less than a week away.  And Sam, to throw in a little extra drama, had been coughing up a storm...not really the best scenario for a one-and-a-half-year-old about to undergo general anesthesia for five hours and rely on a ventilator to breathe.

But after a hurried trip to Sam’s regular pediatrician the next day and an evening phone call from Dr. Buckvold the next night, I felt slightly reassured about Sam’s catheterization.  Slightly.  Basically, we all came to same conclusion that with flu and RSV season coming quickly upon us and Sam in daycare, this might be our best shot. As long as the anesthesiologist was game, the cath was still on for Monday, October 29 at 10 am.

Now, as I sit down at the kitchen table to type this, it’s the night before Sam’s cath. Jason is loading the dishwasher, I'm trying to put off packing up Sam’s books, toys, and pajamas for our hospital stay tomorrow, and I'm realizing that I have been out of touch with just about everyone.  I didn’t update the blog for months.  I forgot to tell most people in my department about Sam’s cath.  I also forgot to tell most of my friends.  I have neglected that lifeline between our crazy hypoplastic left-hearted world and the normal, double ventricle-hearted world.  

And it’s not because Sam probably threw away our phone.  It’s because I have had the pleasure of life away from Children’s Hospital for months and months now, and I almost forgot that we--all three of us--are patients there who are are lucky enough to get extended vacations into the real world.  I almost forgot.  

But the mother ship, through daily phone calls and detailed instructional letters on when Sam needs to start fasting, when we check in, and what we need to bring, is calling us home. It’s time to pack. It's time to go back.  Most importantly, it’s time to reestablish our lifeline to the outside world.

So, if you are still listening, please stay tuned, and we will keep you updated on Sam’s progress tomorrow as he undergoes his second heart catheterization.  We’re hoping they can open up his tiny left pulmonary artery.  We’re hoping his heart function is okay.  We’re hoping like crazy that he’s a good candidate for the third major open heart surgery (the Fontan), because it’s his best shot at a life.  Mostly, we’re hoping that each time the doctor comes out to update us in the 3rd floor waiting room, where we do crosswords and hold our breath for five hours, that she gives us good news about the fate of our beautiful little singing, dancing, kiss-blowing phone thief.

N.B. If you're still wondering about the fate of the missing phone, by the way, I have some breaking news. Yesterday, when I slipped my right foot into my favorite gray boots, my toes hit something hard.  Quickly pulling out, I was surprised to find that inner cave of my boot was glowing electric green.  And there, of course, was the long-lost, left-for-dead phone, still holding onto the last of its battery charge. 

Jason and I weren’t the only ones excited to find the phone.  A few hours after putting the phone back on its charger, I walked into the living room to find Sam happily reunited with it.  With a glowing face and heavy breaths, he kept punching in different combinations of numbers, then pausing to hear the outcome, like he was trying to open up some kind of connection to a world he knew was listening.

Footnote: Sorry for the lack of recent pictures. Sam seems to have the same predilection for the camera as he has for the phone, so it's nearly impossible to snap a photo before he grabs the lens. Most of my pictures come out like this: