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.