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'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.
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 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:
My legs are barely propping me up after my first 12 mile run, and Jason has
spent the last two hours drifting back and forth between the living room and the kitchen, cleaning up last night’s party mess. I turn over the cake stand and watch Sam’s leftover banana/Gerber puff
cake fall like a brick into the kitchen trash. I thought the cake was pretty tasty, but Sam was
suspicious of eating anything twice the size of his head, even if was made from
scratch and in the shape of a heart.
As Jason and I chat about our mornings, Jason loading the dishwasher while I
Clorox the counters, we arrive at the horrifying conclusion that we BOTH gave Sam his four medications this
morning, which means that Sam has been double-dosed. Panicked, I drop the Clorox wipe and run up to Sam’s room, fully
expecting to find him lying in a coma.
Instead, I burst into his room to find him sitting up in his
crib, happily chewing on Wubbie. He lets
out an ecstatic screech when he sees me.
As he gives me one of his huge, open-mouth smiles, I realize that I have
holding my breath for the past two minutes.
I bring Sam downstairs to play while Jason and I make frantic
phone calls, trying to figure how damaging our mistake actually was. We are bad parents, I decide. Only bad parents have to call places like Poison Control. On the floor next next to me, surrounded
by new toys, books, and clothes, Sam only has eyes for one present: A
heavyweight boxing champion belt. It’s
gold and shiny, and, judging by the way Sam is lovingly licking it, it is also
delicious.
In the meantime, Poison
Control and the cardiology department at Children’s reassure us that Sam will
be fine. Even with an extra dose, his medications are still "within safe parameters." Jason and I turn our frenetic energy back to cleaning
since we need to pull the house together before Sam’s occupational therapist
gets here in ten minutes.
Although the wrapping paper and boxes have been cleared out, tangerine and lime colored balloons with white “# 1’s” are
still hovering everywhere. We decide it’s
time to set them free because our little townhouse is crowded enough as it is. After leading
the bobbing balloons outside, we count to three and let them go. They drift up swiftly and drunkenly above the
trees, above everything, until they are just tangerine and lime bubbles in a big
blue sky.
“Where do you think
they’ll come down?” I ask Jason, quietly hoping they never will.
April 27, 2012, 9:45
am
As we wait for the neurologist, Sam and I walk around the
halls, touching pictures and peering into empty offices. The outpatient halls of Children’s Hospital
are quiet and still. Unlike the inpatient halls, there’s no beeping, no
crying, no rushing. Just the sound of
someone lightly pecking at a keyboard in the office down the hall and the buffered
hum of construction outside the window.
Sam had an EEG a week ago, and we’re waiting for the
results. A year ago at this time, I
looked over at Sam in his baby swing to discover his hand ticking
uncontrollably. The rest is a dark blur:
endocarditis, a “vegetation” going to his brain and causing a stroke, an early
and risky Glenn surgery, a missing vegetation and the likelihood of half of Sam’s
brain being destroyed. And then, a long
road to recovery.
The neurologist comes in with a smile and sits down. Here are the results she shares:
Sam’s EEG from LAST YEAR (5/19/11):
“…moderately abnormal…due to the following findings: (1) 6
clonic seizures that emanate from the right central region. (2) Frequent
positive and negative sharp occurring in multiple locations. (3) Dysmaturity.
(4) Rhythmic theta. This EEG indicates significant cerebral dysfunction and
dysmaturity. This is predominantly found
in the right hemisphere where there are spikes, sharp waves, and 6 clonic
seizures with focus in the right central region. This likely results from deep white and gray
matter lesions. The results may indicate
a lesion that is somewhat more extensive than that seen on the MRI.”
Sam’s EEG from last week:
“This is a normal EEG during awake and asleep.”
After testing Sam’s reflexes, tone, and strength, the doctor
confirms that Sam appears to be normal and recommends tapering him off anti-seizure meds. Also, she thinks Sam
is left-handed, which pleases me since I, too, am left-handed and secretly love
all left-handed people. She pats Sam on
the head, shakes my hand, and says goodbye.
No follow-up needed.
As we walk out the main entrance, I glance over to the
inpatient side of Children’s Hospital, feeling a familiar lump in my throat. I always have the strange urge to hang out in
the waiting area, or to grab lunch from the hospital cafeteria. It feels unnatural and selfish to leave—the same
way I feel when I drive past homeless people in my nice car—but I navigate Sam’s stroller around the legion in
my brain, out the thick sliding doors, and into a windy, sunny day.
May 7, 2012, 6:00 pm
Sam and I are having a dance off to J.Lo’s “On the Floor”
when I hear the garage door open. I decide to call the dance-off a tie.
When Jason comes in, I can’t wait to tell him the news: Sam
has said his first word (aside from “Dada” and “Mama.”) Jason looks skeptical. He often thinks that I make things up to make
Sam look good.
In the meantime, Sam is inflicting his daily torture upon
Roxy, our cat. I’m not sure why she
takes it, but she just sits there in his play space, letting him grab her tail
and pile Uno cards and legos on top of her.
If he tries to grab her whiskers, she’ll grudgingly half stand up and
move about six inches away, where he will happily pick up the chase, bear crawling
to her to start the hair pulling and toy piling all over again.
The way he crawls reminds me of baby sea turtles trying to
make it to the water: Breathlessly, forcefully, he propels his body across our
sand-colored carpet with some innate, magnetic sense of destination…the cat? The
recycling bin? His box of legos? It’s
hard for me to tell where he’s headed, but when he gets there, it’s clear by
the way he gleefully grabs the cat’s leg, rolls the empty Diet Sierra Mist can,
or flings his legos, that he felt confident about where he was going all along.
Today, as Jason joins us on the floor, Sam is pressing both
of his chubby hands into Roxy’s back. His babbling grows quiet for a moment,
and he says, “Ca.” He can’t quite get
the “t” sound at the end, but he is clearly saying “Ca” repeatedly as he kneads
Roxy, who looks annoyed and unimpressed.
Jason looks at me in disbelief. “He’s actually saying it, isn’t he?” I nod. He's been saying it all day. It’s unbelievable. It turns out
this kid knows English. This whole time,
he’s been faking us out with his baby babble when he somehow figured out what a
cat was.
Later that evening, he casually says “Bye” to his Fisher
Price piano. When I put him to bed that
night, I wonder if I will come in the next morning and find him scribbling long
division on the wall, like a baby Matt Damon in Good Will Hunting.
A few days later, Sam is admiring his reflection in the
mirror while I’m wondering where my baby went and who exactly this little boy
is.
Sam has finally reached that important milestone that all 10-month-olds aspire to: His first internet date. Last weekend, he skyped with his new long distance girlfriend. Her name is Lucy, she lives in San Francisco, she is the 10-month-old daughter of my friend Jen (the one holding the iPad), and she’s really cute. Here are some pictures of this important event:
Since it has been a little while since our last update, here is a list of the other mini updates from December and January:
1.Sam has “graduated” to going to the cardiologist every three months (remember when he had to go every week?). We don’t have to go back until he turns one in March!
2.Sam thoroughly enjoyed his first Christmas. What did he like the most? The wrapping paper would have to come in first, but he also liked all the attention from his family.
3. Sam loves reading, meaning that he loves turning pages and chewing on books. One of his favorites was a gift from his nephews: The Little Engine That Could. When they gave him the book on Christmas morning, they explained that Sam IS the little engine that could. We couldn’t agree more! Here he is reading it with his “Auntie Smith” and his buddy Adam.
4. Sam apparently made the New Year’s resolution to be g-tube free in 2012 because he pulled out his entire g-tube at a New Year’s Eve party! To make a long story short, we had the pleasure of putting it back in because the paramedics said that we had more experience with it than they did, then we took an ambulance ride to the nearest Children’s Hospital branch, where they checked to make sure the g-tube was in the right place before sending us on our merry way. We decided to go back to the party since we hadn’t had dessert yet, and it was chocolate fondue. Sam gulped down a bottle, slept like…well, like a baby, and then was back to his normal, happy self the next day.
5.Last weekend, Sam got to meet some of his out-of-town “aunties” (my best friends from college), and he got to see his “Auntie Karen” (best friend from high school) who hadn’t seen him since he was a post-Glenn-surgery three-month-old. As mentioned at the beginning of this email, Sam had his first online date with one of my friends’ daughters, and he also enjoyed having a circle of admiring women the entire weekend. While his newfound stranger anxiety prevented any of them from actually holding him, he was pleased to flirt with them from a safe distance.
As you can see, Sam has clearly made his goal of 2012 to garner plenty of female attention. So far, mission accomplished, and we're quite grateful for all of the love. :)
