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 :)