iSam

A post from Kristin!

Jason and I received a text from our great friend Jeff today that read, "Can we get a picture and update on Sam. Please." Note that the grammar makes this more of a command than a question, so we shall happily and apologetically comply. :)

The little guy has endured a tough post-surgery week! The good news: He appears to be stable, and if the missing vegetation is still lurking inside his little body, it's hiding itself quite well. One of the nurse practitioners who works closely with Dr. Jaggers, our surgeon, joked to him, "Guess what? I found Sam's vegetation right here in my pocket!" Also, Dr. Jaggers, a serious man of few words, apparently made up the word "vegectomy" to describe what he did to Sam's heart (according to the nurses, he even giggled a little at his own joke).

The not-so-great news: Sam is not a happy camper here at Camp Cardiac. He is, in fact, wearing his grumpy pants, and understandably so. Apparently, the Glenn surgery reroutes his circulatory system in a way that leaves him with a painful high pressure headache for a couple of weeks. Just as he did after his Norwood, Sam cries out in pain every time he sneezes or coughs because it irritates his healing sternum and his fresh chest incision. Also, he's constipated. It probably doesn't help that Sam is officially off the pain killers. Lastly, because Sam is far younger than most Glenn patients, he needs oxygen to keep his sats stable, and he spends most of his time trying to use his socked and swaddled little hands to pry the nasal canula off his face. It's on high flow right now, which apparently is the equivalent of sticking your head outside the car window at 70 miles per hour. No fun for our little Sam right now.

While we don't expect to see many smiles from Sam in the near distant future, we have found one thing that offers him consolation: My iPod. He loves it. Here's how we soothe him when he's at his crankiest: I play a song while I hold the brightly lit screen in front of him. While I sing along, I pat his tush to the beat of the song. He gazes into the screen until his puffy eyelids start to droop, and his mouth falls open a little as breathes himself into a deep sleep. His favorite song? It's "I Want It That Way," by the Backstreet Boys. I'm not sure if its the soft tune, the intellectually complex lyrics, or the screen image of the Backstreet Boys in their white leisure suits, but it's his favorite by a landslide (click here to enjoy the song and video--go ahead, treat yourself).

Here's one more picture of Sam enjoying his new hobby. And hopefully, we'll have some new smiling pictures to show you soon.

A Little Good News...

So here is the extended update from yesterday...

When Sam came out of surgery the two main concerns were: where did the vegetation go?! and why was the blood flow on the right side of his head less than half of what it was on the left? The original theory was that these two phenomena were related: possibly the vegetation had gone to an artery in his brain blocking blood flow. Very scary! Now--before you panic--that is no longer the theory.

Thanks to some sleuthing by my wife and me, the mystery of the weird blood flow was solved. The sensors measuring such information turned out to be faulty. So, when we asked to have new sensors around 11:30 last night, Sam seemed healed; all of a sudden the numbers looked like they were supposed to! Also, this morning, we were informed that our surgeon did indeed open up the heart-lung bypass machine to look at the filters after the surgery, and sure enough, they found some mucous-y, fibrinous stuff. There are no guarantees that this is the same vegetation that had been next to the tricuspid valve, but Occam's razor would suggest that it is.

As of yet, Sam has not shown any evidence of massive strokes; he is moving all four extremities and breathing well on his own. Plus the blood cultures and other tests for infections have so far turned up negative. So...we're hoping that we finally got that little good luck we needed. Of course, we'll immediately turn around and ask for more, but we are definitely more encouraged than we were yesterday afternoon. Guardedly so, perhaps, but optimistic.

Until tomorrow, more Sam photos!

A rather poignant picture of my wife with Sam the morning before his surgery. He tried to hide behind the book, but alas...he wasn't quick enough to avoid the clutches of the surgeons.

My turn!

Check out that scar; we call him Franken-baby! Okay, we actually don't but we should.

Just a few minutes ago...much more comfortable without a ventilator. Little Wolfman got extubated this morning.

Surgery! (micro-update pt. 4)

So...in true Jaggersian fashion, our surgeon (Dr. Jaggers) just spoke to us and was only partially reassuring.

The surgery is now finished, and Sam is headed to the CICU for recovery. The Glenn portion of the surgery is over and looks pretty good; however, there is one tiny snafu...the vegetation next to his tricuspid valve has gone missing! Where is it? Nobody knows! If it left the heart, that means it went somewhere else in the body; possibilities include the extremities, the gastrointestinal tract, the lungs, or the brain. The brain would be the worst-case scenario. There is some concern that it went there because the oxygen saturation levels on the right side of his head were somewhat low. Now (of course!) that may mean nothing--lots of possible causes.

On the positive side, there are cannulas inserted into the heart to provide suction during the procedure; it is also possible that once the vegetation came loose, the tricuspid weed got sucked up by a cannula. That would be best-case scenario. And bless our friend, Anne, who actually managed to make us laugh by saying, "It sounds like a bad student essay: 'The Machine Ate My Blood Clot!'" You have no idea how close I was to using that as a title for this post.

As far as where we go from here, Sam is now back in his CICU room, and we are not allowed back yet. We hope to see him soon! Only time will show what happened to the rogue vegetation. We are hoping that (for once!) Sam will do what he is supposed to and respond favorably to the surgery.

You'll know more as we do...

Surgery! (micro-update pt. 3)

A cardiac intensivist just emerged to tell us that there do not appear to be signs of infection outside of Sam's heart (this is big news--an uncontrolled infection would spell disaster); also, the preliminary tests on the pieces of vegetation that have been removed appear negative so far. She also added that with the large amount of vegetation on Sam's aortic valve, she feels more confident that they made the right decision in undertaking this surgery.

The surgeons still have a long way to go--the vegetation outside his tricuspid still needs to be addressed, and of course, he still needs his entire Glenn procedure. But we have faith in the little man and are hoping for the best...after all, he is the tenacious Sam!

Thanks for all of your support!

Surgery! (micro-update pt. 2)

So...Sam's chest has been "safely cracked," if there is such a thing. He has been successfully placed on the heart-lung bypass. This is also a big deal, because that was described as a "tenuous" phase in which stroke was a "high" possibility. Kristin corrected that Sam is tenacious, not tenuous, and sure enough, we are on to the next phase, opening the heart. There does not appear to be any infection surrounding the heart, so the surgeon will now attempt to look around and start removing vegetations. Here's to successful weeding...

Surgery! (micro-update)

Sam went into surgery about an hour ago. He's asleep, and all of his lines have been successfully placed. At last update, he was about to be scrubbed, and they were about to crack his chest. Keep your fingers crossed for him...will update as info comes out. They are expecting the surgery to last until around 1ish MST.

Big News

So...all the test results are in.

When the doctor consulted us yesterday afternoon, she brought a chair. Bad start. The first words out of her mouth were, "I don't have great news." Worse continuation. But having learned to /r/e/a/d/ around here, I interpreted it this way: a) the best case scenario has not happened; b) neither has the worst; c) the problem is worse than we hoped d) yet there is a plan of action.

Sure enough...let's start with some good news.
1) All of Sam's blood cultures have come back negative. This is perhaps the most important note. Otherwise, our options would truly be dwindling.
2) Sam had another swallow study yesterday, and graduated from the greatest thickening level (honey thick) to NO thickener at all! When one of the technicians remarked, "Wow, it's unheard of to see such progress in six weeks," Kristin and I simply laughed and said, "Meet Sam, king of 'unheard of.'" While not related to the main issues, around here good news is good news, and we will gladly accept it in any form.

Now for the "not great" news:
1) Despite not having an active infection, the vegetation on his aortic valve is still growing. Think of it as a pearl; it grows by slow accretion. Once there is an "irritation" (like a piece of sand), stuff starts sticking to it. So while it is not infected, it is collecting little...particles floating around in the bloodstream.
2) Worse, this aortic vegetation (as opposed to the the original, tricuspid one) is "mobile" within the aortic valve. That means it will experience three things: more turbulent flow, faster blood flow (smaller opening), and more friction from bumping into the valve. That means it has a much greater chance of breaking off and doing some serious, likely irreparable, damage.

Therefore...

it has been decided that Sam will have to undergo surgery sooner rather than later; the risk of waiting a month or more for the normal time frame of the Glenn surgery is simply too high. And for the first time since we've been readmitted, all the teams of doctors--cardiology, surgery, neurology, infectious disease--ALL of them agree that surgery is Sam's best option at this point.

So, while we were not in a hurry to get to his Glenn procedure, a surgery he would have needed eventually, we are now. The Glenn will happen, and at the same time, the surgeon will remove the vegetations. In fact, surgery is scheduled for tomorrow morning at approximately 7:30 a.m.

Quite a week, huh? Please wish little Wolfie luck! We will try to update throughout the day tomorrow to keep you informed.

In the meantime, here are a few recent pictures of the little guy:

This is Sam being his normal cute and quizzical self...just a bit chunkier:


Sam enjoying his first non-thickened meal! It was a bit awkward, but he got through it just fine:


And finally, the smiling guy in a little bear hat. So cute!

The Short Version (can you imagine the long?!)

Hi all, it's Jason. I'll do my best to summarize the kaleidoscope of the last few days briefly.

Thursday and Friday have been as tough as any days we've had yet. So I try to remember what Atticus Finch tells his son, Jem, in To Kill a Mockingbird: "Courage is not a man with a gun in his hand. It's knowing you're licked before you begin but you begin anyway and you see it through no matter what." Thanks to the most recent news, this is where Sam and we are--trying to remain courageous.

So here's the scoop...though there is a lot of debate regarding Sam's current status--his hemodynamics, the seriousness of his stroke, the severity of the vegetation (now vegetations!) in his heart--one thing is certain: Sam doesn't care a lick about what doctors say; he just keeps on keeping on. He has courage (perhaps born from ignorance of the severity of his condition). The least Kristin and I can do is try to match it. And I believe before we are done, we will need every ounce of it.

Here's the scoop...Sam had a significant neurological event, yet the stroke and resulting seizures are not entirely unexpected. We knew bits could break off of his tricuspid valve vegetation and go to other parts of the body. Also, as a nurse corrected me the other night, having a stroke is not like being pregnant; there are several degrees of severity. Evidently, the severity is largely a function of the size of the embolus, in this case the clot that lodged in the brain causing the stroke. Sam's appears to be small. And while no stroke is good, Sam's prognosis in this regard is still relatively positive. Because it was a small stroke, because his brain is still developing, and because medications appear to be controlling the seizures at this point, there is a good chance his brain will continue to develop with little negative effect. No harm, no foul as it were. We may never even see pronounced, long-term effects. In fact, after three days of frequent seizures, Sam was in many ways back to his normal self today. Check out the pictures at the bottom!

On the more...challenging side, there is still a lot of mystery (and some disagreement!) regarding the source of the embolus. Echocardiogram now reveals another vegetation on the former aortic valve. There was also growth on the tip of the PICC line, which has since been removed. These new growths are most concerning. If they weren't there when we started antibiotic treatments, that means they are drug resistant or a different strain that has likely spread elsewhere, making him bacteremic. If that is the case, that would change the nature of his struggle significantly for the worse. It would mean that antibiotics may have little, if any effect, and surgical options would have a high risk of mortality. However, his first blood cultures have returned negative (which is good). If the next few are the same, then perhaps this other vegetation was present originally and simply was not appreciated. If so, that would be encouraging; it would mean the status quo continues and we observe Sam carefully, treat his stroke, and move on towards the second surgery, the Glenn, as before, hoping we can address these vegetations surgically when the Glenn is performed. And though there are a hundred other variables, and this summary does not begin to reveal the complexity of all this, this is the best I can offer in a brief note. We are gathering our courage and preparing for the results of the next several days' tests.

Here's hoping Wolfman ends up on the right side of the odds for once! In the meantime, here are some pictures of Sam this afternoon. He's up to his usual vivacity, and I, for one, love him all the more for his ability to keep smiling while all this nastiness is going. It is his most endearing trait, and I will do my best to learn from him how to remain courageous.

So...without further delay, here are some new Wolfie pictures. Let's call it "The Smile Series"...







Not a smile picture, but I couldn't resist. And don't worry...no Wolfie's were harmed during the taking of this photograph! The bear is not actually kicking him in the face; he's just holding the binky in place while Sam tries to go to sleep. Good night everyone, and here's hoping the morning (and especially the next few blood tests!) turn up good news.

...Ages and Ages Hence

The title of today's entry should tell you all you need to know about who is writing this entry...

Let's start here. I'm always apologetic when it's been so long between updates but two familiar notes:
1) My BFF Sue told me just yesterday that it was okay because no news is good news. She is, of course, absolutely correct. As I tell my Creative Writing students, "No good narrative without conflict." Over the last several days, all there is to tell is about cuteness, the joy of being home, and how Kristin and I feel like we're kind of figuring out how to take care of this beautiful boy. Not enough conflict to warrant or drive an entry.

2) Turns out, now that I've been back to work full-time and Kristin is a full-time mom, precious down time is usually spent fighting sleep deprivation (read: catching 40 winks in front of an 8:30 p.m. sitcom).

So...with that, onto the meat of today's entry. In my professional opinion, the problem with Robert Frost's poetry is that way too many people misinterpret his work. Which is really not his fault at all. What does this have to do with Sam and his condition? Patience. Sue would also tell you that I have to do this in my own way. Yesterday, I sat through a ceremony recognizing our school's IB graduates. Two of the speakers had separately prepared speeches, but both invoked Frost's most famous poem, "The Road Not Taken." Read it if you haven’t before; it’s short and brilliant. Anyway, the speakers of course referenced "the [road] less traveled by," an ostensibly obvious commentary on the value of individuality, and lauded the students for their gumption in attempting IB, generally considered a much more challenging program than the "regular" curriculum. However, while I love that idea in principle, closer inspection would yield other possibilities for the poem's interpretation.

For example, the title itself focuses elsewhere, specifically on "The Road Not Taken" (italics mine). Focusing on the negative emphasizes what is missing in the speaker's life, not what is present. Think of it as the photo-negative to the final stanza's apparent positive. So, rather than suggest the value of taking this "other" road, the title actually gives the poem a tone of regret, a sense of longing perhaps for the possibilities that the speaker does not get to experience. Further, the second stanza includes the most frequently ignored line in this piece: "Though as for that the passing there/Had worn them really about the same." Evidently, these roads have very little difference if the traveler bothers to consider more than just an initial, gut reaction. Moreover, the third stanza tells us quite directly that "both that morning equally lay/in leaves no step had trodden black" (italics mine). Are we certain the speaker's road was somehow better? Since when did equality connote superiority? Why applaud a choice that is simply equal to the other option? And of course we find in the last stanza that the speaker "shall be telling this [story] with a sigh." Why a sigh? A sigh of relief? Of satisfaction? What about the possibility of remorse? Of loss? We never find out what "all the difference" is. Was that difference beneficial? Did it bring satisfaction? The only textual evidence supporting this view says the road is "as just as fair," an equivocating comment at best. Some would point to the phrase "having perhaps the better claim." But again, "perhaps" lacks certainty. And, as previously noted, is immediately followed by the qualifying note that upon closer scrutiny both are "really about the same.” Frost leaves the question regarding difference ultimately unanswered. So what can we safely infer? That this difference made him more successful? Happier? Hmm...I suspect not. It may be so, but not necessarily. In light of the other stanzas, we should at a minimum suspect otherwise. The poem focuses on "doubt" and "keeping the first [road]" in mind, not complacency based on having made a correct choice. All of which is to say that we should consider another possibility when understanding this piece. Joy of individualism? The collective would say so. To me, on the other hand, it is much more about the way perception, especially initial perception, leads and misleads us. We know with certainty what is best, yet hindsight suggests otherwise. We interpret one way, and yet further examination gives the lie. Which brings me to the real topic: Sam.

Sam is doing wonderfully since he’s been at home! His infection is under control. He is taking more food than ever by mouth. His cries are getting louder and stronger. He is more alert. He is more interactive. He is happier and smiles more. He is gaining weight. He continues to “look great!” clinically.

He is sicker than ever.

As of 1 o’clock or so this afternoon, we are back in hospital. Sam had a stroke. My wife noticed that Sam’s left arm started twitching while he was taking a bottle today. He stopped eating. His eyes glazed. His left wrist oscillated like an old man with Parkinson’s. When it happened again a few minutes later, Kristin hooked him up to our home pulse-ox, made sure he was stable, then drove him to the Children’s Hospital Emergency Room. His sats, his heart rate, his respiration have been stable throughout, but like his long-gone sleep apnea, he has been having episodes every 5 or 10 minutes. His echoes look like they have not changed, yet clearly something, somewhere has. All his numbers look great, yet he continues to get sicker. An MRI confirmed this afternoon that Sam has something (probably a blood clot) in his brain that has caused this stroke, which is manifesting as a series of seizures. The good news? It appears to be a small clot, causing a small stroke, resulting in minor seizures. The bad? Is that like being a little pregnant? A little wet? Are there really degrees of acceptable, non-frightening, non-life-threatening strokes and seizures? This stroke-causing clot came from somewhere. Where? His crucial PICC line? The “vegetation” in his heart breaking up? Somewhere else we’ve not considered? Will other clots—larger, more dangerous clots—navigate their way through his body? What does this mean for his stability over the next couple of months before he gets his Glenn surgery?

I would be lying if I said I wasn’t tired of hearing how good he looks while simultaneously watching his condition deteriorate. I no longer care how “grassy” his path is; his “fair” looks mean nothing to me. Better an ugly road that leads, however unpleasantly, out of the woods.

Forgive my momentary pessimism; it’s late, and I am exhausted, not really able just yet to wrap my head around this new development. I’m sure the morning will bring comfort and hope. "I shall be telling this with a sigh/Somewhere ages and ages hence." Hopefully, that sigh will be one of relief. Until then, one sad photo and several beautiful, overdue ones. I will go to sleep with the latter in mind. Good night.

Sad moment: a technician hooks Sam up to an EEG to monitor his brain activity during seizures.

The little guy starting to recognize his own reflection:

My lovely wife has good fashion sense. So dapper!

That elusive moment...Wolfman smiles at his Aunt Anna!

Home!

After the third blood culture came back negative, the doctors sent us home today! Like last time, the past several hours have been a hurricane, and we are both exhausted. Unlike last time, we saw the hurricane coming and geared up. With my sister Anna in town, we have an extra set of loving and helpful hands to cook, clean the kitchen, do laundry, make trips to the pharmacy, spoils us at Babies R Us, and cuddle Sam as we desperately pull meds, set up appointments, prepare feeds, and unpack.

With our new regime of antibiotics, the schedule is even crazier than before--something is being prepared/admistered/cleaned, etc. almost every half hour, and of couse, we just want to spend lots of time with the little guy.

But most importantly, the little guy seems quite happy to be home--all smiles and wide eyes. As we rocked back and forth in the gliding chair tonight, I read him a story. He listened, and we cuddled into the calm of his quiet nursery.

Welcome home, Sam.

The Missing Pictures

A post from Kristin:

The day that we first left the hospital, Jason and I were so anxious and excited to go home that we dropped the camera and broke it. Actually, Jason dropped it and broke it. When he gets stressed, he tends to drop things, especially his cell phone and Sam’s binkies. But this time, it was the camera. Since we were subsequently unable to document Sam’s exodus from the hospital, Sam’s two and half days at home, and Sam’s return to the hospital, I would like to try to use my words to recreate some of these missing photos:

The Day that We Left:

Jason and a hospital volunteer packed our 6-week-lifetime into the red Children’s Hospital wagons. They’re just like regular Radio Flyer wagons, but they have IV poles rising up from the back. I stayed with Sam as Jason and the volunteer wheeled our hospital life to the newly washed and vacuumed car, complete with a carseat base in the backseat.

The room emptied out little by little until it was finally just the three of us—Jason and I looking around, feeling as though there must be some piece of us accidentally left behind and the room, and little Sam buckled safely into his brand new carseat. We knew it was safe by the way, because we (A) watched a video on carseat safety, (B) read a packet on carseat laws, and (C) had the nurses check the straps repeatedly. As we walked out, the nurses and doctors played the “So long, farewell” song from The Sound of Music. I had them gather around the desk and tried to take a picture, but as aforementioned, the camera was broken.

The Moment We Stepped Outside:

Sunlight found Sam’s face for the first time. He flinched and squeezed his eyes closed. For the first time in six weeks, I paid attention to what the hospital looked like from the outside.

Sam’s First Car Ride:

He fell asleep. His chubby little cheeks rested on his brown and green striped fuzzy pajamas as I repeatedly checked to make sure he was breathing.

I have to admit that I had envisioned our first trip home as a glorious voyage—an epic homecoming in which the clouds would part, a rainbow would stretch over our little townhome, and the three of us would enter our sunny living room and breathe a sigh of relief to be home.

Instead, it went like this: The pharmacy that was supposed to have his heart medications was inexplicably empty handed, forcing us to rush to three different pharmacies before they closed. Like dominoes, the pieces of my perfect imagined homecoming knocked each other over one by one. As Jason argued with the pharmacist inside the Kaiser building, I tried to console an increasingly anxious Sam. Discovering that he only stopped crying when I drove the car at least 35 miles per hour, I had to exit the parking lot and drive around the block about 15 times, singing the alphabet song.

So by the time we actually got home, it was a half hour past Sam’s feeding time, it was almost time for his meds, we had a car full of our hastily packed stuff, and Sam had pooped himself.

The next four hours were a whirlwind of chaotic bottle preparation, med pulling, and G tube pump set-up. The rest of the night consisted of Sam waking up crying every 30 minutes, and Jason and I taking turns having mental breakdowns.

When I “woke up” (did I ever actually sleep?) the next morning, I turned to Jason and said, “That baby just kicked my ass.”

Sam’s Second Night Home:

I wrapped him up in a fuzzy blanket, no wires or tubes tethering us to anything, and snuggled him as long as I pleased while the three of us watched my favorite episode of Scrubs. It ends with the song, “Somewhere over the Rainbow.”

Sam’s First Clinic Appointment:

After reviewing Sam’s heart echo, the doctor said, “I’m going to couch the conversation like this: We’re going to have to readmit you to the hospital.”

“Today?” I asked.

She nodded and showed us a video of an ugly little vegetation that swung back and forth like punching bag outside Sam’s heart valve.

Sam’s First Night Back in the Hospital:

The nurses took sad and loving care of us, as did our friends. Tears rolled down one of our favorite physician’s cheeks as she described the dangerous potential of this growth in Sam’s heart. I cried into Sam’s smooth little neck because I had promised him—I promised him that life would get better, and now here we were, facing days and days (if we were lucky) of IV pokes and trying to snap his pajamas around so many wires…

But Sam, the little fighter, slept peacefully on my shoulder, letting out little smiles in his dreams.

And Now…

We’re waiting for many answers, and we’ll be waiting for a long time, but the blood cultures have at least told us that the very rude bacteria that has obnoxiously invaded my son’s tricuspid valve is called enterococcus faecalis, and luckily, it’s responsive to three different antibiotics. But these antibiotics do have their own side effects, including permanent deafness, so I asked for an infectious disease consult.

I have to brag for a moment here: As I asked the infectious disease doctor questions this morning, he asked me what field of medicine I was in.

Anyways, we’re hoping that the antibiotics do their job without wreaking havoc on the rest of Sam’s cute little body. In the meantime, we’re enjoying every single minute with him.

Here are some pictures of the fun the three of us have been having for the past few days (taken with our new camera):

Sam's onesie in this photo is a gift from Susan (and a favorite among the doctors here):

Self portrait:

These next photos are from what I call "The Blanket Series."

Big yawn!

Sam and Wubbie:

Most important update of the week: Sam has started smiling--big, open-mouthed smiles. I have yet to figure out what prompts these unexpected grins, but I'm working on it. As soon as I capture one of these elusive smiles on camera, I'll post it. In the meantime I'll describe this missing photo like this:

His blues crinkle a little as his milk-crusted lips curl up like a wide and slightly crooked heart, exposing pink gums and naked happiness.