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!