The Boxer

Upkeep:
1) Photo: a couple of people have commented on Sam's photo from the last entry, and I realized I forgot to give proper credit. A photographer named Angie Taylor, a friend of my sister-in-law, photographed Sam a few weeks ago. She took a number of beautiful photos and kindly sent several to us via email. Her work is what you are admiring.

2) Blog comments: in my day-to-day world (it's Jason), I'm not known to be the most emotionally demonstrative person in the world. In fact, a friend of mine recently said, "Dude, you don't even like to answer the phone; how can you make your blog so public?" Good point. Maybe I (we!) need the support in ways I hadn't expected. That said, Kristin and I love reading the thoughtful comments that so many of you leave. On days like today, they make a difference when we need to marshal our strength.

Update:
Last night, to calm Sam down from his middle-of-the-night desat, echo, and x-ray, I sang him a song. The only one I could think of was Simon and Garfunkel's "The Boxer." In light of the last 24 hours, the last stanza seems as prescient as ever:
In the clearing stands a boxer
and a fighter by his trade
and he carries the reminders
of ev'ry glove that laid him down
or cut him till he cried out
in his anger and his shame,
"I am leaving, I am leaving"
but the fighter still remains.

It's the last line that does it to me. In spite of all the trauma, so bad that you not only want to submit, you actually say you are done...and yet, you don't concede. That's the part that I love. You still remain. Wolfie will be fighting a new battle for the next several weeks.

This morning, we woke up to the surgeon in our room (never a good sign). We learned that there would be no MRI or CAT scan today because of risks to Sam's health. Overnight, his blood cultures grew. This means that the something in his heart is at least partially made up of infectious bacteria from the strep family. He started a new antibiotics regimen today and will do so for approximately 6 weeks. Two hurdles exist:
1) He needs semi-permanent IV access. This was accomplished today when cardiac anesthesiology placed a PICC line. We will spend at least tonight in the CICU to make sure the procedure has no complications.
2) The second hurdle is more dangerous. The goal is for the antibiotics to slowly dissolve/melt/erode the mass. Pick a word that works for you. The problem is that there is no way to control how this process occurs. Picture an ice cube on a sidewalk. If the ice cube slowly melts, you almost don't know it. Water pools and evaporates away from a central core, absorbing into the air with not much leftover at the original site. That would be ideal. Of course, sometimes the cube melts in some kind of fault line and a chunk will fall off from the original to be absorbed separately. If this happens, the chunk will go...somewhere. If such a chunk goes out his new aortic arch, it could find its way into his brain and cause serious problems. If such a chunk goes into his shunt, it could clog the whole works and cut off blood supply to his lungs...

The short version is this: the only viable way to treat this problem is with antibiotics. Which may work. But they may not. Or they may work in a way that causes more harm. Surgery could correct it, but due to risk level they will not schedule any before the natural progression of the planned Glenn surgery. If he can hang on until then, a surgical repair may be possible. We're just hoping that (for once!) he follows the rules, and his body allows the antibiotics to work as they are supposed to, to dissolve the glue holding the mass together and letting the rest melt into thin air.

Sigh...more long nights and no sign of going home again. We've been told anywhere from 3 days to 6 weeks. Will post again when we know something new. In the meantime, I can hear our little boxer grumbling post-diaper-change. Good night all. And CT, sorry I missed you. I was really looking forward to seeing you; it would have been nice to come back today. Soon maybe...

Hello-ello-lo-o-o...

Hello all. Apologies all for the long delay. We’ve not been keeping radio silence for any particular reason; call it overwhelming-ness-itude (not sure what the noun form of that word is). It turns out that this parenting thing takes a crazy lot of energy, and things that are not truly essential tend to get done “later.” And frankly, from us silence is a good thing. It means no news. Dullnes. Which, if you’ve read earlier entries and a later part of this one, is a very good thing. At any rate, later has become now, and there are so many things to tell! I’ll explain…

It always amazes me how the smallest things just seem to take on a life of their own and grow and grow. Back in November, for my wife’s birthday, I bought her a baby blanket from Babies ‘r Us. We’d only recently been given the HLHS diagnosis, and it seemed important to give some sort of token that emphasized our commitment to Wolfie. A baby blanket seemed like a good idea. Simple. Meaningful. At the time, I had no idea how such a small decision as “which blanket should I buy?” would have such substantial echoes. It turns out that by selecting a blanket, I had inadvertently chosen an entire theme for the baby’s room! Who knew?! I just liked the colors. So sure enough, after the baby shower and after putting together our nursery last week (bye-bye video game room), I began to understand what choosing a baby theme meant. Everything…no, really—E-V-E-R-Y-T-H-I-N-G matched that first blanket I chose. Just a few cute animals in a boat. You know, a giraffe, an elephant, a lion, a monkey…yep, you guessed it: Noah’s Ark.

So did I mention echoes? Small things assuming more and more importance as time goes on? On the positive side of these echoes, we were discharged earlier this week! On Monday to be precise. Coincidentally, after exactly 40 days and 40 nights, Kristin, Wolfie, and I got to go home. We got to experience all the beautiful, horrible elements of parenthood: enjoying the beginnings of intentional smiles, watching the baby meet the kitties, loving beautiful eyes, getting zero sleep, fearing we would screw up Sam’s meds or his personality, wondering how we could get up and do it all again the next day. It was both painful and lovely.

On the negative, we are back in hospital as of this afternoon. For two whole days we were free! But today, during a “routine” follow-up appointment, the cardiologist came in after viewing Sam’s echo and said, “I’d like to show you a few pictures.” We didn’t bother to feign surprise when, after showing us the images, she said Sam needed to be re-admitted immediately.

Wolfman has…well, something-that-isn’t-supposed-to-be-there-and-wasn’t-there-in-the-last-echo-two-weeks-ago growing on the inside of his heart. To borrow an understated phrase from one of our physicians, “This is very dangerous.” This something has evidently gained the attention of just about every cardiologist or cardiac intensivist in the hospital. And believe me, the last thing you want if you have a child in the hospital is to have doctors who are not assigned to your case to suddenly become…interested. Doctors’ lives are crazy, and they have no time for extraneous workload. Ever watch House? It may be wildly unrealistic in some ways, but they got one thing right: interest means mystery. Interest means rare or dangerous or more likely both. As of now, these other docs are not interested because of what they think it is: either “vegetation” created by an infection (endocarditis?) or a blood clot that has attached itself next to the tricuspid valve in the right side, the working side, of Sam’s heart. They are interested because of the relative size of the growth. Evidently, it is quite large. Which means that, whether it is clot or infection, if part or all of it somehow comes loose, it could flow to various parts of the body and…well, that would be bad. Tomorrow (now today, as I finish writing this at 6:30 in the morning), they will perform at least an MRI and possibly a CAT scan to see if any clots have broken off and lodged in his brain. That means stroke. Hopefully, we will know more before long. We will wait and see.

Finally, you may wonder what this second part has to do with Noah’s ark. 1) The echo. In the same way the blanket and its significance grew on its own, so has this something. 2) Bill Cosby. A long time ago he did a fantastic sketch describing a conversation between Noah and the Lord. It’s worth listening to: CLICK HERE. One of the great lines from it occurs when a neighbor wants a hint from Noah about what the ark is for. Noah says, “You want a hint? How long can you tread water? Hahahahahahaha.” Later, Noah starts complaining about all the work he’s doing and how he’s sick and tired of it all and isn’t gonna do it anymore. In response, the Lord simply says, “Noah! How long can you tread water?” Classic. On the other hand, I wonder.

I won't say anything more on it now, but, frankly, we are worried. Still...as our little blanket reminds us, we are also committed. And that means, until it is time not to be, we will remain hopeful.

As always, thank you for hoping with us.

Micro Update

It's Jason. Trying to keep this super brief. Because there's so much to tell about the last couple days, I (or Kristin) will need a pretty substantial entry to encompass it all. On the other hand, I know people want to know how we're doing. So...until we have time to elaborate in a more substantial entry, here's the most important stuff.

The last few days have been long and drama-filled. Nonetheless, Sam is recovering pretty well.
1) He's more alert than ever; they even canceled his home PT because his developmental markers all look so good!
2) His G-tube site looks good and appears to be functioning properly. Now he's able to take his feeds in an hour or less. Also, with his reflux effectively stopped, his vitals (including his oxygen sats and heart rate) have been much, much more stable.
3) His last heart echo looked great.
4) He is entirely off oxygen support, and the doctors have started weaning some other meds (specifically Lasix).
5) I almost don't want to say this for fear of jinxing it, but the word "discharge" has been ringing in the air. And this time they are not talking about messy diapers. Nothing has been decided yet, but we are hopeful...
6) In the meantime, Kristin and I are getting a crash course in caring for a cardiac baby with a G-tube at home...by ourselves...a great stress to have.

That's the most important stuff for now. Will fill you in on the details when I have more time and energy. Right now, Sam's binky has fallen out of his mouth, and I have the honor of retrieving it for him for the umpteenth time tonight. :) Night all.

Until next time, Sam says, "Phlbtttth!"

Longer G-Tube/Nissen Surgery Update

Hello, it's Jason. Sorry about the delay everybody. As you may have realized, days involving any kind of procedure get pretty wild pretty quickly. Here are some pictures to give you a sense of the day's arc, from build-up to recuperation.

The calm before the storm. Otherwise known as "mama time":


The Continuing Saga of the IV: We may have mentioned before that Sam does not take poking well. Once they had the IV placed yesterday, they had to wrap it up to protect it from being "unintentionally removed." Here, I think he either looks like IronMan (check out his arm cannon) or maybe some sort of gangsta (just picture a cigar instead of a binky "Hey Spike, get this thing out of me or you'll be swimming with the fishes").


Consent: As this is a teaching hospital, we made sure to verify that the attending surgeon would actually be the one performing operation before we signed any forms. Call us paranoid, but when our cardiologists say this is the guy we want doing the cutting, we listen.


Surgery: It took a little longer than expected, not because of the surgery itself but, as I mentioned, it has proven very difficult to poke him effectively. Translation: it took a while to get an arterial line placed. As for the surgical component, the surgeon said, "He seemed to tolerate it pretty well." It's no "Rock solid," but I interpret that as surgeon-speak for "Everything went as well as we could ask."

Recovery: And finally, we are now in the CICU waiting for Samuel to recover enough from the anesthetic to effectively breathe on his own. Once he does, they'll extubate him, and we will likely be headed back up to the CPCU sometime tonight. Until then, thank you as always for your good thoughts and good wishes. Hopefully, the next time we post, the ol' Wolfman will be tube-free (except for the G-tube), and we'll be getting ready to go home! Until then, here's the poor little sedated guy. He says, "Every time I go to sleep, I wake up with another attachment! Stop it already!":

In Short...

Wolfie's fine and recovering in the CI. More info to follow...

Update #1

Sam was taken to surgery about an hour ago. He was wide awake and hungrily sucking on his pacifier as we wheeled him in his crib from the 9th floor to the 2nd floor. He seemed unphased and happy as anesthesiology started to prepare him for his operation.

No real updates yet, but we're hoping he'll be out of surgery in about an hour. We will continue to keep you posted!

Mini Update

Sam's surgery has been moved up from 4:45 pm to 9:30 am tomorrow. Good luck, Sam! We will post updates.

Also, good luck to our friend Jeff, who will be running (like the wind) in the Boston Marathon tomorrow.