Tuesday, November 22, 2011

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


Monday, November 21, 2011

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 PlanThe 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.


Tuesday, November 15, 2011

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 :)


Monday, October 31, 2011

Happy Halloween!

Rawrrr!

Sam the lion cub (minus the giant headdress)

Making Daddy laugh

Sleepy Sam hanging out with Aunt Stephanie

Snuggling his true love--Sophie the giraffe :)

Thursday, October 27, 2011

What's New?

See if you can guess what’s new from this picture:


Just in case you need a hint, here is Sam 30 seconds before the above picture was taken:


That’s right! Our boy is off the oxygen. He is Sam, unplugged. The picture above shows the ceremonious moment in which Jason and I simultaneously removed Sam's tender grips. 

It’s amazing to be able to take him up and down the stairs, out on a walk, out in the car, etc. without having to turn his oxygen tank off, disconnect him, turn on the new tank, and reattach him to it. He feels like an entirely different baby, and he looks pretty different, too. As Jason put it, it’s like looking at someone who always wears glasses without their glasses for the first time. I think Sam feels the same way because he spent about 30 minutes staring at his little reflection in the mirror this afternoon.

Aside from our excitement over Sam’s ability to thrive without supplemental oxygen, we are also looking forward to not having to change those awful tender grips on his tender cheeks every few days, not having to pick dried mucus out of his nasal cannula with a toothpick, not having to order oxygen tanks and respiratory supplies, and most of all, not having to start every day by suctioning out his nasal passages. Hurray for freedom!

On a slightly less smiley note, we also wanted everyone to know that Sam’s upcoming heart catheterization has been scheduled for November 21 (the Monday before Thanksgiving). Please send your good thoughts our way because we are really, really hoping this works...even though we know that there is a good chance it won’t. Our little Sam is a tough guy, as we all know, and being proactive with this procedure will hopefully spare him from extra open heart surgeries in the near future.

A little information that's less critical but more fun: Sam is now enjoying the high life…from his new high chair. Here are a few pictures:
He looks so tiny!

Just before his first high chair meal...
...about 60 seconds later. (Those are pureed peas, by the way.)
Thank you for reading the blog and keeping up with us (even when we’re not so great at keeping you updated). I will be sure to post some Halloween pictures next week of our lion-hearted little man. 

Friday, September 23, 2011

Bananas!


Sam has finally ventured into the world of real food! His favorite item on the menu is pureed bananas, which he eats like a voracious little monkey, kicking his chubby little legs excitedly and opening his mouth impatiently. He can eat almost an entire banana in the time period of about 20 minutes. He tries to grab the spoon himself, but he unfailingly sticks it right into his eye.


Our doctor was quite pleased with his weight gain; Sam is now weighing in a little over 16 pounds, which puts him in the 20th percentile! For a cardiac baby, this is especially exciting since gaining weight is often a problem when half of your heart is doing all of the work.

While the doctor was happy with Sam's overall growth, his left pulmonary artery and descending aorta remain small as of this week, and they are perhaps growing even narrower. If they do not improve by the end of October, it looks like Sam will undergo a heart catheterziation in November. While we are not looking forward to this, we are hopeful that it will work and keep Sam from enduring another open heart surgery this year. Clinically, however, Sam looks great! His upper and lower blood pressures are the same, which is apparently very important, and he otherwise continues to thrive.

Aside from the food and the discoveries made at this week's appointment, here is a brief list of Sam's other accomplishments this month:
1. Rolling frequently from stomach to back (and almost from back to stomach, but his arm keeps getting in the way)


video
2. Discovering his feet
3. Turning pages while being read to
4. Screeching happily and/or angrily
5. Getting upset when I leave the room
6. Noticing when I eat and demanding to be fed at that moment
7. Pivoting himself around in his exersaucer (which he is doing as I type this!)
8. Somehow wriggling himself off his exercise mat onto the carpet. Also, when I come into his room in the morning to get him up, he has rotated himself 180 degrees in the crib and looks quite pleased with himself.

Thanks for reading, and I hope everyone is enjoying a beautiful autumn so far.

Saturday, August 27, 2011

A Good Weekend (Followed by a Lukewarm Week)

Sam’s cardiology check-up earlier this week revealed both good news and bad news. The good news: Nothing on his heart echo has changed in the last month. This means that there have been no new growths, no extra valve leakage, nothing new to earn our concern. The bad news: Nothing on his heart echo has changed in the last month. This means that his left pulmonary artery and descending aorta are still too small, and as Sam continues to grow, they will start causing problems if they don't start growing.

The first line of attack to address this problem would be a heart catheterization to try to “pop” the artery open with a balloon. While this is a relatively minor procedure as far as heart procedures go, our doctor doesn’t feel particularly confident that it will work. The second line of attack is much more aggressive: Yet another open heart surgery to “revise” the problematic pieces of his heart. Boo. Neither Jason nor Sam nor I are willing to face this possibility yet, so we are holding onto the hope that Sam’s artery and aorta will grow in the next few months.



On the happier side of things, Sam has made a new friend, and his name is Max!



He is the very cute son of a very close friend of mine, Julie. While both Max and Julie live in San Francisco, they came out to visit us last weekend, and Sam and Max had many adventures. I’m pretty sure that Max, who is a whopping eight months old and an expert roller, is the one who inspired Sam to start rolling. Sam and Max also enjoyed taking turns whining at stoplights as they sat in their side-by-side carseats in the back (until they both fell asleep).






We took them on a walk around Washington Park, and then stopped by Waffle Bros for a little brunch. At Waffle Bros, Sam enjoyed lying on the table (I wasn’t sure what else to do with him while I ate my waffle) while Max enjoyed a little breastfeeding with Julie. It worked out pretty well until Sam kicked his foot into the Nutella on my waffle. As a man walked by us with his baby strapped up in a stroller, he remarked, “Those babies are having a good time!”


We all had a good time. Below is a picture of Sam charming Julie, as well as a picture of me giving cute Max a big kiss.









Sam misses Max, but he still has his old friends to hang out with, including our cat (who has taken up residence in Sam's pack & play). Other news? In addition to his new skill of rolling from belly to back, Sam also likes to spend his spare time babbling, blowing saliva bubbles, and, most importantly, giggling.







Wednesday, August 10, 2011

A Blue Morning

For the first time since we’ve been home from the hospital, we had a somewhat dramatic morning. Jason woke up around 6 am to discover a blue Sam sleeping in his crib. I’m not speaking metaphorically here—Sam was not depressed but physically blue, especially around his mouth and eyes. When Jason hooked him up to the pulse-ox, he found that Sam’s oxygen saturation levels were in the 60s (as you may recall from earlier posts, Sam’s O2 level is supposed to be at least 75, preferably in the 80s).

Before you start to feel as panicked (as we did), let me assure you that right now, Sam is pink and snoring happily away in his vibrating chair. To make a long story short, we think that Sam’s upstairs oxygen equipment failed last night. He has an oxygen generator upstairs in his bedroom and a regular tank downstairs, and within 30 minutes of switching him from his upstairs to his downstairs oxygen, his sats perked up to the high 70s. Unfortunately, he was probably satting in the 60s all night, so it took him a little while to recover this morning. We called his cardiologist, and she said that as long as sats remain stable on the downstairs equipment, we don’t need to bring him in.

On the happier side of things, Sam has made some good progress this week with his oxygen (last night disregarded). For the first time, I was able to lower his oxygen yesterday to 1/8th of a liter, and his sats remained stable in the low 80s! This is significant because our doctor thinks that we if can get him to 1/8th of a liter, we may be able to increase one of his medications and take him off the oxygen altogether.

While the oxygen may not seem like a huge deal compared to everything else he’s been through, it seems to become a heavier and heavier weight each day to all three of us. It causes Sam significant nasal congestion, which upsets him and, ironically, prevents him from getting the oxygen he needs. When we suction him out daily, he screams his head off and his nose usually starts to bleed. But if we don’t suction him, his sats drop to the 60s because he can’t breathe properly. It’s a bit of a double-edged sword.

Also, while I know that Sam won’t remember any of this, I still worry about the effects of his being on a "leash." I keep thinking about how they train circus elephants by keeping them on short leashes when they’re babies; that way, when they grow up to be gigantic, they remain tractable and submissive because they don’t realize that they are actually far more powerful than the rope that tethers them. In other words, I don’t Sam to sense on any level that he is tethered. Hopefully, within the next few weeks we’ll be able to get rid of the oxygen leash, and by the time Sam figures out how to get mobile, he’ll be able to crawl as far away from the oxygen tank as he pleases.

In the meantime, here is a video Jason took two weeks ago of Sam trying to figure how to grab things. Enjoy!



video

Monday, August 1, 2011

Hello all! It's been a long time since I've posted and I feel a bit out of the groove...been too busy enjoying being a teacher on summer vacation, I guess.

Regardless, let's start here...I went to a friend's wedding this weekend and had such a good time. In their speeches, the bride and groom were so thankful for the presence of their family and friends, and I was reminded how important that can be during the significant moments of your life. So, as I have often done in the past, and will continue to do in the future, I should tell you all how thankful Kristin and I (and Sam too!) continue to be to have you all in our lives. Thank you again. And props to my friend Andy, who came to visit and brought some cyberfriends along via facebook. Pretty cool to see a note from Streeter.

Moving right along, we had a clinic visit last week with both neurology and cardiology. And I'm happy to report that both went pretty well on the whole. Neurology feels good that Sam is recovering well from his stroke. They do not feel like he should wean from his seizure meds just yet, but they are encouraged that he seems to be using his left hand (the site of his seizures) nearly as much as his right. At home we're enjoying seeing Sam become more and more coordinated. He's able to lift his head during tummy time and he's getting better at using his hands to grab things. Of course, that also means he can grab his G-tube, which I predict will be forcibly (if accidentally) removed by Mr. Sam himself within the next month.

Cardiology is also encouraged. Sam's heart echo looks improved, so we have yet again postponed the catheterization that Sam will eventually need to decide whether his left pulmonary artery is being overly compressed. At present, any compression does not seem to be affecting his clinical status, and as a rule, if it ain't broke, don't fix it. So that plan is on hold for the time being. Also, we are in the process of weaning meds and finally oxygen! Hopefully by our next clinic visit (about 3-4 weeks from now) Sam will only be on 4 meds and will be ready to give up the nasal cannula in exchange for his simple, natural cuteness.

Sadly, his slated first day off the oxygen is my first day back to class with students. I won't be able to go to that clinic because I'll be in class, so I'll have to wait until after school and golf practice before I get to see his pristine little baby face. Pardon the self-indulgent whining, but Kristin and I have both been home with Sam all summer and have gotten into a pretty good rhythm. It will be hard to go back to work. And what will happen when I'm out of the house for 12-14 hours a day during golf season? I guess you could say we're apprehensive. Still the answer to the burning question: "How's Sam?" is still a good one. "All considered, he's about as well as we could hope for."

Here are some recent photos to enjoy:

Sam with "Uncle" Andy. He knew Andy was in town for a concert, so dressed in his rockin' best; check out that t-shirt!










Sam sitting in a Bumbo, learning to hold his head up and spending quality time with Wubbie.























Also quality time with daddy.






















And finally, some mommy love. I mean, seriously, how cute is that kid?! It's just gross.

Thursday, July 14, 2011

Our Happy, Fat Little Baby


After going two and a half weeks without a doctor’s appointment, Jason, Sam and I became human again! We decided that it was time for Sam to get out and experience the world...in a relatively germ-free way, of course. Sam has attended Fourth of July and birthday parties. He’s been grocery shopping, Babies R’Us shopping, and out to dinner. He’s been to the pool, but not in the pool, and I am slightly embarrassed to share with you that Sam’s first movie was Bad Teacher. Luckily, he slept through most of it, as did much of the audience.


Our leash to Children’s Hospital is a little longer now that Sam has undergone the Glenn (his second surgery); instead of going to a 5-hour high risk clinic every week, we now go to a normal, 2-3 hour outpatient appointment every two weeks. And to be honest, much of those 2-3 hours is spent socializing with the doctors, nurses, clinical assistants, and custodial workers that formed our hospital family for the eleven weeks that we lived there. Our most recent appointment was on Monday, and when we went up to visit the Cardiac Progressive Unit, Sam was immediately surrounded by such a large flock of hospital workers that I wondered who was taking care of the actual patients on that floor.

According to our pediatric cardiologist, Sam has now earned a degree of “fame” at Children’s Hospital, so he has several sets of eyes examining each of his echoes. And while nobody really wants his or her child to be "famous" for uniquely challenging illnesses at a children's hospital, I’m happy to report that all eyes were pretty satisfied with his echoes this time around. As of Monday, there is nothing new or “remarkable” or “impressive” to report, which is a good thing in doctor lingo. All looks the same as or better than it did two weeks ago! Most notably, Sam’s oxygen levels are rising, which means that we can start the process of weaning his oxygen a little.

Actually, the doctor’s only complaint is that Sam is slightly overweight! I am apparently overfeeding him a little. He’s fine right now, but if he continues on this growth curve, he could be on the track towards obesity—one medical issue that Sam certainly doesn’t need added to the mix. When we took Sam upstairs to say hi to his girlfriends, the nurses laughed at the notion of Sam being chubby. They said that it was a “problem” they welcomed, and one that is pretty rare for cardiac babies. I have since lovingly nicknamed him “Chunky Monkey,” “Chubby Bubby,” and “Chubs.”

Despite his multiple surgeries, Sam is luckily still hitting his development milestones. He is starting to reach for things, grasp them, and bring them to his mouth. Unfortunately, his favorite item to do this with is his nasal cannula; at least 50 times today, I looked over to find Sam looking like a happy baby vampire with the two prongs of his nasal cannula tucked under his upper lip.

His neck strength continues to build, as does his ability to bear weight through his arms and legs, and he’s able to eat more and more by mouth. Perhaps, a bit too much…

Still, he's a happy little guy.

Monday, July 4, 2011

Happy 4th of July!

So evidently, we will only be posting on national holidays now...next update: Labor Day!

Ok, just kidding, but it does kind of feel that way, doesn't it? It's just that, being home, our free time (what little there is) is now being directed to doing things other than the blog. You know, like going out to dinner occasionally, getting back involved in my golf league (btw this is Jason), exercising, catching up on TV shows. No joke, we literally watched last season's Survivor finale three days ago. I guess when we have the chance to be "real" human beings instead of being locked up in the hospital, we take it.

In the meantime, here's a micro-update and a few pictures of the little guy. As of Sam's last clinic appointment, he looked, in the words of our cardiologist, "great!" No return of infection! He's growing well, and continuing to strengthen his body and his ability to feed. Not to say he's perfect, but he does seem to be happy at home and remains a very smiley little guy. Here are a few photos of our summer.

Here's Sam with Grandpa Kakos and Mugga. Mugga painted some fun things in Sam's nursery; I'll try to post pictures of the nursery soon.


More recently, my Dad came into town. Sad that he couldn't hold Sam the first time he came to visit (just before and after the very first surgery), Grandpa Leclaire swooped him up within seconds of arriving on a summer visit.


And my step-mom, Miss Marge, got to hang out with him too.

Wishing all of you a happy and healthy 4th. We're going to a BBQ with some friends but will make sure to keep our oxygenated son away from fireworks!

Sunday, June 19, 2011

Happy Father's Day!




It’s Jason’s first Father’s Day, and I’d like to take a moment to thank him for a few little things that make a big difference to me:

1. When Sam screeches every time I attempt to transfer him from my arms to the crib (usually around midnight), Jason somehow magically gets him to go to sleep while I get to pass out in our bed. This is why Jason has nicknamed himself "The Sam Whisperer."

2. Jason is the one who gets up for Sam’s 6 am meds and bottle each morning so that I can sleep in a little. And he almost never complains about it.

3. Jason stays up each night to pull and label Sam’s meds for the next day. This is a precise and time-consuming process, and it saves me a lot of time and stress the next day. Jason is also the ones who cleans all the syringes, and we go through at least 15 a day.

4. No matter how tired and grumpy he is, Jason is always all-smiles when it comes to Sam. When Jason picks up a sleepy and somewhat grouchy Sam, both of their faces light up when Sam realizes he's being held by his daddy.


5. Even when I’m exhausted and half asleep, Jason makes me stand up to hug him. He always sees that we make time for each other, reminding me that no matter how much energy we spend on Sam, our marriage comes first.

Happy Father’s Day, babe! Sam is one lucky little guy.

Wednesday, June 15, 2011

We're HOME!












A quick post from Kristin:


First, Jason and I apologize for the long, long, long delay in updating the blog. As always, we thank you for keeping us in your thoughts.



Things have been a little crazy since we left the hospital For the first two days that we were home, we had no less than ELEVEN different medication times per day for our little Sam the man, including midnight, 3 am, 4:30 am, and 6 am. In fact, as I sit here typing this blog, the midnight alarm on my phone is reminding me that it's time for Sam's sildenaphil. I'll return in one moment...


Luckily, we have now consolidated his medicine times to 6 am, 9 am, 12 pm, 6 pm, 9 pm, and midnight. And the best news is....we no longer have to give Sam his IV antibiotics! Having to access your son's central line three times a day is stressful, and I'm glad that part is (hopefully) over.


Sam seems to be enjoying the good life at home. Except for a little crankiness due to nasal cannula congestion, he's a pretty happy camper. He made it through his second pediatrician's appointment today without crying, and he enjoyed an outing to our friend's house. Since he didn't really nap much today, just now I was able to give him his meds, carry him upstairs, change his diaper, and reswaddle him without waking him up. He's a cute little guy.



My favorite thing to do now that Sam's home? I like to pick him up in the morning, blanket and all, and cuddle him in the rocking chair before he wakes up. That way, when he opens his eyes, it's not because he's being weighed or poked with needle or having a thermometer stuck in his armpit (all necessary and important things to do in the hopsital, but not the most pleasant way to wake up). Instead, he's in my arms, and as soon as he blinks himself awake, he looks up at me with bright eyes and one of his big, toothless smiles. It's my favorite moment of the day.



Anyways, my brain is sleepy and incapable of deep, meaningful thoughts right now, but I can say that it all boils down this: I don't care if I have to get up every fifteen minutes to adminster some kind of medication to Sam. It's worth all of it and more to have him home.

Monday, May 30, 2011

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.

Thursday, May 26, 2011

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.

Wednesday, May 25, 2011

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...