Heart is where the Home Is

Things around our house are finally getting back to normal after the Smaller Animal’s surgery.  Make sure you’ve read last week’s update, if you haven’t already.  This will be the final update here, barring anything new and major coming up.  Next week I hope to get back around to entirely-surgery-unrelated topics.

And that’s primarily because there just isn’t much to report.  He’s been to both his regular cardiologist for a standard check-up, and back to the hospital for removal of suture, staple, and steri-strips.¹  Everyone who’s seen him agrees that he’s doing amazingly well.  He’s almost completely back to normal, aside from repeated attempts to scratch his chest (which we have to discourage, according to the docs and nurses).  We’ve finally started putting the brakes on lording it over his siblings, and, while they can’t go back to physically trying to kill each other, they’ve pretty much all graduated from the “we’re being nice to you because you might have died” phase and have moved on to the “I’d forgotten how much of a pain in my ass you can be” phase.  Which is actually sort of nice, oddly, in that it represents a return to normalcy.

Of course, he still has to wash his chest with two separate washcloths and can’t allow the shower to spray directly on it.  That keeps up until the scabs finish forming and then fall off.  He also can’t submerge the incision (so no baths or hot tubbing) or put any cream or lotion on it² until all the pinkish-redness fades completely.  And even then, no riding in the front seat or doing anything that might involve falling or getting hit until a full 8 weeks has passed, which is also when his sibling can go back to tackling him and sitting on him and whatnot, presumably.³

During this healing phase, his skin is being held together by that dissolvable stitch, and his bones are actually held together by a thin wire.  This wire is now a permanent fixture of the Smaller Animal’s body.  It’s not enough to set off metal detectors,⁴ but we have to notify anyone that wants to give him a CAT scan or MRI in the future that it will produce a blurry area in their readouts.  I believe I reported previously that his elder sibling was pretty jazzed about him now having a bit of a dead person in him.⁵  The demonspawn had already proclaimed that this made their little brother “undead.”  Now that they know there’s a bit of metal in him as well, they’ve proclaimed this makes him an undead cyborg.  What more can one ask for in a brother?

I suppose this is the point in a life-changing experience where we typically stop and reflect on what we’ve learned.  But I’m not entirely sure what that is, other than how incredibly lucky we are.⁶  Lucky to live in a major metropolitan area, where it just so happens that one of the best cardiac valve replacement surgeons in the country—if not the entire world—is also living and practicing medicine.  Lucky to have made it 11½ years on a leaky valve, to the point where my kid is nearly 5 feet tall and just over a hundred pounds, which gave him a much better shot at a positive outcome.  Lucky to have a kid who’s put up with all this massive amount of pain and discomfort with hardly any complaining at all.  Lucky to have friends and family who have been very supportive, a job where I could take as much time as I needed, a homeschool group who’s been feeding us for two weeks now so we haven’t had to cook.  All of these things have contributed to this experience being far gentler than we had any right to expect, and I thank all of you folks reading this, all those folks not reading this who nonetheless contributed in some way, and whatever engine runs the universe—be it random, kharmic, or divine—for having this play out as it did.

It’s possible that we were supposed to learn to be kinder to each other with the limited time we have on this earth.  But then I think that lesson was already pretty much in our faces from the time the kid was born, so I’m hesitant to fall back on that old chestnut.  It’s also possible that we were supposed to learn that it pays not to rush into big life decisions, particularly those that are medical in nature, without doing lots of research (which we obviously did, in this case).  Or maybe there’s no lesson at all—maybe Patton Oswalt is right and everything is chaos and we should just be kind.  I’m okay with that too.  It’s just that, if the universe were trying to tell me something, I’d hate to miss it.

At the end of the day, our kid is home, desperately trying to beat Breath of the Wild on his new Nintendo Switch and chilling out by watching the new Punisher series with me.⁷  He’s sleeping well, which I know because he’s sleeping with me, at least temporarily.  We all feel better if there’s someone next to him in case he has an issue in the middle of the night, and his old sleeping place—the top bunk in the demonspawn’s room—is not really an option right now.  While he was in the hospital, I started reading him a book—the first book in the Wednesday Tales trilogy.⁸  Now, at night when he goes to bed, I’ve started reading it again, trying to finish it up.  It’s been a long time since he was willing to sit and listen to me read to him.  I hadn’t realized that I missed it.  But I guess I did.  It’s nice.  I’m really enjoying it now.  Not sure that counts as a lesson, but ...

I think I’ll take it.

__________

1 For those who like medical details:  The suture was to close the hole where his chest tube was poking out.  The staple was at the bottom of his dissolvable stitch, and I assume it was just there to keep the stitch from unraveling prematurely.  The steri-strips were basically just little strips of packing tape that were holding the incision closed along with the stitch.

2 Not even neosporin, which is making me crazy.

3 Fun fact: 8 weeks from his surgery date is exactly January 1st.  So I fully expect the day after New Year’s Day to be pretty crazy around here.

4 Currently.  The doctor pointed out that they it’s always possible that they might make more sensitive metal detectors in the future.

5 This would be the cadaveric valve installed as part of the Ross procedure.

6 If you are religiiously inclined, you may wish to substitute “blessed” for “lucky.”  Go ahead.  I won’t stop you.

7 Both highly recommended, by the way.

8 Also highly recommended.  Even more so, really.

Heart Homecoming

Well, I’m a bit tuckered out tonight, but I have time for a quick update on the Smaller Animal’s surgery.

We brought him into Children’s Hospital at 7am on Monday; they took him back for surgery around 9:15am.  By that point he was already doped up and feeling pretty happy.  By 1pm he was back in ICU, his Ross Procedure a great success.  His surgeon stopped by to let us know that all had gone well, but it was a very short conversation—Dr. Starnes is a man of few words.  The patient was, as expected, very groggy for most of the rest of that day, although he could recognize us and answer questions ... well, yes or no questions, at least: they didn’t take out his breathing tube until around 1am.  By the next morning he was sitting up and playing his new Switch; by dinner, he was already up to eating meatballs and peas.  After dinner, they removed the chest tube—it was the only time that he would cry (or even complain) while in the ICU.

On Wednesday he started doing walks around the floor.  That night, they finally removed his dressing and we got to see his cool new Frankenstein scar.  By Thursday morning, they were prepping him to go home.  A little after noon, we left the hospital.  (This, by the way, was more than a day earlier than we were told was the absolute minimum stay he could expect.  Which is pretty positive, overall.)

Life at home was a little better than in the ICU, as you might imagine.  He had his familiar food around him, no one was telling him he couldn’t eat bread because it’s made with milk and his stupid parents made the mistake of mentioning he’s lactose-intolerant (for the record: lactose intolerant does not mean you can’t consume anything that’s been waved near a cow), and everyone was falling over themselves to do things for him.  He got to sit on the reclining couch and he didn’t even have to put the legs up (or down) himself.  We finished up the new season of Stranger Things in 2 or 3 marathon sessions.  The Lasix (a diuretic) they had him on was killing us, because it made him need to pee every 15 minutes (if not more often), and getting up and down off the sofa when your breastbone has been cracked in half and jammed back together and wrapped up with a wire is not so easy.  But it wasn’t so bad, and he never complained, or even asked for more pain meds.

Which brings us to today.  Early this morning he developed a headache that was so bad it made him cry—and, remember, this was only the second time he had cried since his surgery, and the first time was when they pulled a big tube out of his chest and cinched up the skin around the hole by just yanking the sutures taut.  So it was obviously pretty bad.  Then he started complaining of nausea, and then the barfing commenced.  Needless to say, we took him back to the hospital.  Now, in general, going to the emergency room with a sick kid is a pointless exercise that consumes hours upon hours of your life and, in the end, your kid just gets better on their own and the doctors do absolutely nothing you couldn’t have done yourself.  I would love to tell you that it’s different when you have a kid that just had heart surgery under a week ago, but unfortunately that would be a lie.  But, on the plus side, they took another chest X-ray, which indicated that all the fluid is out of his lungs, which means he can get off the Lasix, which was probably the source of the problem all along.  Guess what happens when you’re peeing every 5 to 15 minutes?  You get dehydrated.  Know what the symptoms of dehydration are?  Major headaches and barfing.  So I guess that was something we couldn’t do at home after all.

Anyhow, the upshot is that, tonight, he’s been more animated than I’ve seen him in quite a while.  (Because, you know, even in the days before the surgery, the nerves and stress meant that he was a bit more subdued than usual.)  But tonight he was joking around with his siblings, doing a lot more things on his own, actually excited about eating for a change ... actually showing some signs that this whole ripping-him-open-and-putting-him-back-together thing might have left him better off than before.  Which we’re all pretty excited about, obviously.

So, it’s been quite an ordeal, and a very stressful week where none of us got much sleep—and the sleep we did get was absolutely terrible: I’ll probably have to go to the chiropractor every day next week to unkink all the joints that I’ve ruined from sleeping at the hospital—but I think the end is in sight.  We would like to thank our doctors—Dr. Starnes, who did the operation; Dr. Leong, his regular cardiologist; and Dr. Wong, a partner of Dr. Leong’s who visited him in the hospital several times and had the final say on getting him out so quickly—and our nurses—Kristen, Nicole, Natalie, Amber, and Sofya—and Leon, our respiratory tech who got his breathing tube out so he could talk again.  And we’d like to thank all of our friends and family who sent us their positive energy, in whatever method they were most comfortable doing.  Plus a big shout-out to our homeschooling group, who’s been feeding us since we got home by dropping off food every day so we don’t have to think about cooking.  All of you have been a great help and have made it much easier to get through this.

Looking forward to happier days ahead.

Final approach to heart repair

First, a recap, so you know what we’re talking about:

• Initial post (on this blog) about my son’s heart condition—rough description of the issue, including a link to my original writings about it
• Post giving the heart condition update—this is when the doctors told us it was time to start thinking about the surgery
• The actual surgery announcement
• Brief description of this past pre-surgery month
• Even briefer surgery countdown

So, this post is reaching you in between our pre-surgery appointment, which was this past Friday, and the actual surgery, which is tomorrow (as you read this).  Since we’ve had another trip to the hospital—far more medical than our last one, which was mostly about talking to the doctor—I can now also give you an even more thorough

Brief medical breakdown (for those who like gory details):

• The exact procedure being done is called the Ross procedure.
• Side note: the nurse practitioner said that Dr. Starnes will attempt to do an aortic valve repair, which would theoretically obviate the need for a replacement valve altogether.
• Of course, Dr. Starnes himself never mentioned this; presumably that’s because the chances of success are slim, and he didn’t want to get our hopes up.
• Therefore, we’re not getting our hopes up.
• The replacement valve will be a cadaveric valve, also called a “homograft.”
• The surgery will take about 4 hours.
• We will be arriving at CHLA at 7am.  No food after 11pm the night before (not a problem, as he’ll be asleep by then), and no liquids after 5:30am.
• He will come into the ICU with chest tubes and wires; hopefully already extubated.^*  He’ll be on morphine until the tubes and wires are gone (which will hopefully be in under 24 hours) and then on Lortab (i.e. oxycodone) and OTC painkillers (e.g. Tylenol) after that.
• He’ll be getting back to solid food as quickly as he’ll tolerate it.  Also, they will encourage him to get up and moving as soon as he can; it helps with drainage, apparently.
• He will most likely be in the hospital for a total of 5 – 7 days.
• During this time, mother, father, and older sibling (who is over 18) can be in the room at any time.
• Younger sibling will not be allowed in at all (due to “flu season”), so hopefully he can get out of bed and come to her when she visits.  Otherwise, Google Hangouts.

Practical stuff, if you’re here to see what our schedule will be:

• I will be completely off from work for the week (I actually started as of Friday, due to the pre-surgery appointment).  I may poke my head into the chat rooms, just because there will be lots of waiting and I may get bored.  Or then again I may not.  Nice to have the freedom.
• The following week I will return to work, but perhaps not physically.  I’ll probably work from home at least part of the week, depending on where we’re at with the recovery period.  I’m very lucky to have a job where I can totally play that by ear.^**
• Similarly, I will probably not be doing anything related to any of my online responsibilities, including but not limited to my position as admin at Heroscapers.com, my various CPAN modules, and this very blog.^***  But then again I might.  If I get bored.
• The Mother will likely not be doing anything for the entire two weeks (if not longer).
• The demonspawn (our eldest) will be missing classes on Monday (already cleared with the professors), but returning to class on Wednesday.
• The sprite (our youngest) is just on extended vacation for a few weeks.

Final thoughts:

Time is winding down until this whole ordeal is over, one way or another.  I hope for a good outcome.  I even go so far as to expect a good outcome, as best I can.  I would like to believe that the universe is not done with my son, even if it’s only to keep teaching me valuable lessons about what’s important in life.  But the truth is, anything can happen.  And, as I pointed out in one of those other posts above, it’s ostensibly true that anything can happen at any time, and I try to remember that as much as possible.  But having that “anything” shoved down your throat with a bunch of fatalistic (literally) medical forms is an unusually stark reminder of the mortality of your loved ones.  Bit of a signpost for the fragility of life, and routine, and family.

Except that’s wrong.  Family is not fragile.  This past week the two younger kids (or “the littles,” as we sometimes call them) went to CostCo with The Mother.  While there, they picked out giant teddy bears (not quite as big as they are, but pretty close): one with a dress, and one with a T-shirt and jeans.  These were promptly named after themselves, and it was agreed that, when the Smaller Animal went to the hospital, he would take the girl-bear with him, and the sprite would keep the boy-bear with her.  You know, as traveling representatives.  So that, no matter how far apart they are in the coming week, they’ll have each other, via proxy bear.  That’s the strength of my family.

No matter how difficult it may be for me to remain positive, my son has no such problems.  He continues to smile regularly and make jokes.  As I write this, he’s in the other room playing video games with one of his best friends, who’s spending the night with him in a tent on the floor of our front room.  He’s having fun.  I’m doing my best to be inspired by how well he’s taking it.  I’d like to tell you I’m being strong for him, but I think it might actually be other way around.

So we’re going to keep on supporting each other, and clinging to each other, and we’re going to get through this.  I can’t yet see how it’s going to come out in the end, but I know that, whatever happens, we’ll be stronger for having had each other, and for having had this wonderful child.  Now it’s time to see what the future has to offer.



For those of you who know us personally—and/or who just feel so inclined—we will gratefully accept your positive energies, be they in the form of prayers, rituals, spells, or just good vibes, should any of those be a thing you believe in.  And, even if not, thank all of you for your support and friendship throughout the years.

Once we have further news, I will be disseminating the information as best I can.  If you’re connected to me on Facebook, there will likely be a post there, as well as one in the chat rooms at work.  Barring that, I may try to return and edit this post with the outcome at some point.  Worst case scenario is you’ll just have to wait a week.  But probably not.

Thanks again.


UPDATE: As of Tuesday morning (11/7/17), the Smaller Animal had a successful surgery, is back in ICU, and finally got his breathing tube out (at around 1am).  The surgeon said the procedure went well; he did look at repairing the valve, but it wasn’t feasible, so they went ahead with the Ross procedure.  (Or, as his older sibling put it, “there’s a little piece of a dead person in him now ... it’s kinda neat.”)  He’s talking, more or less alert, and surprisingly not complaining about the myriad of tubes still sticking out of him.  So he’s a trooper, and he’s doing great.

Thx to everyone for your positive energy.  We all appreciate it.

__________

* That means with the breathing tube removed.

** And thank you very much to my bosses, who have been extremely supportive throughout this process.

*** For more info on my online responsibilities, you could read my posts about Heroscape, CPAN, and the masthead paradox.