Procedure Is Done!

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

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

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

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

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

Cath, part 2: The Plan

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

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

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

Let the cath begin!

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

Anyway, to the important stuff...

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

Nighttime Reflection

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

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

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

So now, my nighttime routine looks more like this:

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

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

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

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

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 :)

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. 

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)



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.