A Few Glimpses into the Life of Sam the Toddler

March 17, 2012, 10:00 am

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 flashes himself a coy smile and says, "hi."

Sam's First Online Date (They Grow Up So Fast!)

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. :)

The Day After

As always, there is good news and bad news.  Bad news first because there is less of it and it's basically over now.

Last night Sam did the impossible: he threw up...twice.  It's not entirely accurate to say that it's impossible; improbable is more accurate.  You see, as a result of his Nissen fundiplication, he should not be able to throw up.  That means that there was a lot of pressure in his tummy forcing out formula.  Basically, we think that Sam has limited gastrointestinal motility as a result of the anesthesia used in his procedure.  In real words, that means he can't poop just yet.  His gut needs to "reawaken."  So...we had some moments of drama before realizing that we can't feed him quite as aggressively as we normally do.  For a while, I thought that might keep us in hospital an extra day or two, but that leads me to the good news...

Evidently, this is a pretty common side effect of anesthesia, not to mention relatively short lived.  Now, trying to pin down a precise answer from doctors is like trying to herd cats, but we managed to wrangle out a rough time frame.  These symptoms should subside in the next 1-3 days, and, until then, we need only to be more conservative regarding the speed with which we feed him.  As long as we do that, we (read: Sam!) should be fine.  So, in short, they let us go...as of half an hour ago, we're home!  Hooray!

More importantly, the cath doctor was relatively optimistic about the results of the procedure.  Sam had both an x-ray and an echo today to check the results of the balloon plasties, and the docs liked what they saw.  Of course they cannot make any promises, but they are optimistic about the implications of Sam's cath.  They feel that the SVC narrowing has been significantly redressed, to the point where, had he not been a great candidate before, he now is likely to be a good candidate for his Fontan procedure (which he is slated to get when he weighs on the order of 30 lbs).  They also liked what they saw with his descending aortic arch narrowing; as a result of the plasty he now has less pressure differential in the different veins and arteries and stronger, more pulsatile pulses in the areas past the arch.  These are good things.  And while there are no guarantees that these interventions will be permanently efficacious, their effects are promising.  Perhaps we've simply bought another year before he needs another cath, but as Kristin and I were reminded of the difficulty of day-to-day living in the hospital, that year is likely to be wonderfully spent at home with a happy, chunky little boy.

So...as always thank you for caring to follow along; any strength we possess is largely due to the strength of the support we have around us.  Thank you also to the amazing doctors at Children's.  Here are a couple more pictures for you as I go back into turtle mode: I hope you all have as much to be thankful for this week as we do!



Grandpa sharing a Thanksgiving turkey with Sam!



Home & happily sitting in Daddy's chair



Procedure Is Done!

We just finished speaking with the doctor who performed Sam's cath, and though we are still waiting to see the little guy, we have some updates.  I won't go into extreme clinical detail (this is Kristin posting, not Jason), but two of the three problematic areas were successfully expanded, and the one that wasn't expanded doesn't seem to be causing too much worry.  The extra vein that he had grown was successfully blocked off, and he has already been extubated.

He was bleeding from the insertion sites fairly heavily, so they had to apply pressure for a little while, and they will continue to watch for potential blood clots and signs of internal bleeding.

Overall, the doctor seemed pretty pleased with how well Sam responded to the cath and felt that the procedure was largely successful.  He also said that he would not recommend any additional surgery for Sam at this time.  Our hope is that any other problems that crop up can either wait for his Fontan (assuming that Sam will still be a good candidate for the Fontan in a year) or be addressed with another cath sometime in the not-so-near future.

Hopefully, we will get to see the little guy soon because we sure do miss him.

Thank you for all of your prayers, good thoughts, and support! We will continue to tell Sam how well loved he is as we continue to keep you posted.  Thank you again.

Cath, part 2: The Plan

So, the diagnostic phase of the cath is complete, and our favorite cardiologist, Dr. Buckvold, just came out and updated us on The Plan.  The Plan is threefold and not very different than expected:
1. There is a pronounced narrowing in the descending aortic arch (which we knew about before), so the docs will do a balloon plasty in an attempt to enlarge it.
2. Sam has developed a collateral vein running from his pre-Glenn SVC to his heart.  In layman's terms, an additional vein has formed which takes some blood that is supposed to be destined to go to the lungs and instead reroutes it to the heart.  This is a problem because it adds unoxygenated, "blue," blood to the red blood being pumped to the body, thus diluting the oxygen levels in the body.  (By the way, can you tell it's Jason writing yet?)  To mitigate the problem, docs will place a coil into the ancillary vein, effectively plugging it and causing it to shrivel up.
3. Finally, at the Glenn site itself (where the SVC branches into the pulmonary arteries), further narrowing exists.  Guess what?  They'll balloon plasty that area as well.

All of which is to say...nothing particularly unexpected, but we will definitely be here at least overnight and possibly longer.  Here's hoping the plasties go well and Sam gets discharged tomorrow...

And, as always, thank you for those of you who follow along.  Thank you for either posting supportive comments or silently sending good wishes.  Thank you.

Let the cath begin!

So the first thing they did upon our arrival in the Cath Lab was put Sam in a miniature gown.  It was cold, so we left his little socks on...how cute is that?  And sure enough we saw a number of the usual suspects, all of whom commented on Sam's continued cuteness and chubby growth.  It was a bit surreal seeing Sam in the same size crib as he used to have but taking up a much larger proportion of it.  But it was also nice to have a sense of scale for how much he's grown and improved so far.

Anyway, to the important stuff...

Sam started his cardiac catheterization about 10 minutes ago.  It took a bit longer than expected to get "access" to his veins in order to start the procedure, but so far there is nothing of interest to report.  He started at roughly 10:00 MST, and we expect them to not only take diagnostic measurements but also attempt at least one balloon plasty (in order to widen some narrow spots in his arteries/veins).  So...we expect the procedure to take between 4-6 hours, and we should have another update in about an hour or so...until then, here's a cute picture of Kristin loving on the little guy before they took him away.

Nighttime Reflection

Sam's not the only one needing a nap.  Jason and I are finding ourselves particularly run down these days, and I think it's partly because we're both starting to feel nervous about driving Sam back to Children's Hospital in less than a week.

As I mentioned in a recent post, Sam has to undergo a heart catheterization next Monday to help expand a few parts of his heart that are too small. Although nobody seems particularly optimistic about this procedure working, we're really, really hoping that it will save him from more drastic measures in the near future (by "more drastic measures" I mean open heart surgery, moving to a lower altitude, and/or heart transplant).  But we're trying not to jump too far ahead of ourselves.  As the doctors have wisely taught us, we can't get caught up with the "what if's" of the future because there is an avalanche of variables.  Instead, we try to focus on just today, and as it turns out, that's plenty.

I used to spend hours lying awake at night, frantically plotting out the different paths that Sam's life (and ours) could take.  But I had to knock that off because it was turning me into a crazy lady who muttered to herself and forgot things, like feeding the cats and brushing her hair.

So now, my nighttime routine looks more like this:

11:00 pm: Give Sam his meds
11:10 pm: Make Sam's bottles for the next day and set up overnight feed
11:20 pm: Kiss Sam goodnight and say thanks to the world for letting me have this day with him
11:30 pm: Sleep like a rock (for at least a few hours)

It's actually pretty peaceful, just reflecting on the day instead of projecting all the tomorrows.

Thanks to all of you for helping keep us sane.  And a very special thank you to my sister, Stephanie, and her husband and two boys for watching Sam last Friday so that Jason and I could go on a date.  It was the best birthday present (aside from the Keurig) that you could have given me.

Before I start up the nighttime routine for this evening, I have one more important piece of news: Sam has a new winter jacket/snowsuit that makes him look like a tiny polar bear. Good night :)