Busy End to a Quiet Day

So, after a long pause, we extubated today! :)

The breathing tube is out and James is now on a slightly more complex version of a CPAP device: forced air with oxygen. Fluid is steadily coming off, which is good, and they plan to try reducing his different meds and oxygen concentrations overnight.

His Fontan circulation is now fully operational.  

Of course, we weren't sure this was gonna happen at all today. James was off sedatives at 4 am, and it took him over 12 hours just to wake up. Slowly, he came out of his dream cloud, gave an occasional cough, shrugged his shoulders, and raised his braced arms to scratch his itchy brows.

Once awake, he was super bleary eyed and made very tiny movements, but he was awake enough to take out the tube. And as soon as it was out, so was James -- fast asleep again.

James has barely made a peep all evening, with super hushed "yesses" when asked if he wanted water, and only one itty bitty croak to indicate he wanted to move a little to be more comfortable. So, we moved him, gave him a wet sponge to chew on, a few minutes of a Thomas video to zone out on, and he promptly fell right back to sleep -- again :)

Since then, they've reduced his meds drastically already, lowered his forced air pressure, and removed just about all his IVs and drips from the bedside.

Tomorrow, we're expecting him to be a lot more lively, but after a very quiet start, James gave us a nice happy busy evening.

One more hurdle cleared.

Little Dreamer

James has made slow but steady progress in the last 24 hours. Big picture-wise, he's unchanged: fluid retention, low blood pressure, sedated and asleep. The pain meds keep his blood pressure too low, but easing those meds makes him agitated, so he's been somewhat at a standstill.

There have been lots of minor changes and improvements though: little by little, his numbers are improving, and each improvement allows a medication to change slightly, and then he improves a teeny bit more...

He also looks a bit less swollen today, but the big news, as usual, will be when the breathing tube comes out. It's still expected to come out tomorrow, which means breathing on his own. It also means stopping the sedation and letting him wake up.

The fun part is, even while semi-unconscious, and connected to a couple dozen different tubes and cables, and laden down with arm braces (so he doesn't pull those tubes and cables in his sleep), James is a mover. Last night, he went from parallel to perpendicular in his bed, bit by bit, shimmying his way across and down the bed.

As always, James determines his own directions, and we can't wait to see him conscious and tell him we love him - let's hope he's ready tomorrow!

Wait and see

James has been fairly steady over the last 12+ hours, which is to say that he's been steadily unsteady. He still has a lot to worry about and his team of doctors are watching him closely. He's on a lot of medication, and needs more meds that he's not stable enough to begin. They're going to leave him be today, but check him frequently, and as soon as anything improves they'll gradually lower some doses and start integrating the next wave of meds.

He has a lot of fluid retention which has leaked around his heart and lungs and keeps him swollen and his blood pressure low. But treating this would drop his blood pressure, and it's already too low to allow that...

He had a very rough time immediately after the surgery, and all afternoon yesterday we were unable to see him while his doctors worked to bring down his temperature and get him hydrated and stable. Although they didn't give us details until afterwards, he was in critical condition. He's much more stable now, but will not be out of the woods for awhile.

His big concerns today are raising his blood pressure and getting the excess fluid to start draining. He still has a fever on and off but it has stuck to manageable levels throughout the night.

The BIG next step is taking out the breathing tube. Ideally this would have come out yesterday, but James is no where near ready yet to breathe on his own. The tube will stay in until Friday, most likely, if his current trajectory holds.

 

James' Recovery Begins

James is a trooper. He began the Fontan this morning at nine AM. Five hours later, Dr Chai comes out to tell us James's surgery went well. Six hours later, the surgical team finishes up, getting him ready for the move to the PICU. Seven hours later, docs in the PICU tell us James is sedated heavily, sleeping peaceful in the PICU, while they put in lines of various fluids and meds to stabilize and hydrate him for the recovery ahead.

Eight hours in, they tell us he's still not stable and they're working hard to get him there. We haven't seen him yet as they try to get him to a happier place - "hopefully soon" has been the mantra for the last few hours. 

And James has a hearty recovery in store, probably won't be lightened off sedation or woken up until he's more stable, most likely will be here a week or so as his body adapts to the new plumbing, but they plan to make the first big step and take out his breathing tube by tomorrow evening, possibly as early as tonight.




Meanwhile, mommy and daddy wouldn't mind a walk and a nap :)


PS Weill Cornell, mommies and daddies might also not mind if non-medical folks here decided to treat parents who are here with and for their children less like criminals and vagabonds hitching along for the ride, but that's for another post another day...

Fontan Is A Go

James, mommy, and I arrived at Weill Cornell very early this morning for James' Fontan procedure.

I'm not sure mommy and daddy are ready, but James is ready, Dr Chai is ready, and all the folks here at the hospital are super ready for James.

Mommy looks great, cuddling with James:

Daddy has his late-night sleepless-eye bags on:

And James has got his too-cool-for-school tiger scrubs on:

We'll keep you all posted on progress. Send your happy thoughts, hugs, and prayers c/o James :)

Waiting for surgery...

In case you missed the update a few weeks ago, James' surgery got bumped to next week. The new date is July 14.

In the meantime, we're enjoying some family time at home, taking James to the park, getting his new room set up, and having lots of cuddles. He is reading books a lot and singing to himself frequently. He loves to snuggle with his blanket on his very own couch.

Elise is about to hit her own mini milestone: she'll be 6 months old on the same day that James heads to the hospital.

3 years old!

James turned 3 last week, and we had a small celebration with ice cream cake and gifts. The cake was for our enjoyment, of course, because he doesn't like cake or ice cream. He got some great gifts though, which he already is tearing into and mastering new skills:

- Spelling: he got a set of books with an electronic read-along pad that has prerecorded words and spelling activities. By the next day he had already figured out the spelling portion, and not just learned but memorized several words. He can spell sun, moon, art, baby, dog, cat, and cow without even a prompt now!

- Music: Between his new piano and his triangle (plus other instruments, but those are the favorites) his room has been emanating a constant cacophony of noise. He loves it. Fortunately Elise is a deep sleeper.

- Books: The flip flop flaps and alliterative silly sounds of his new pop-up book have him tackling some tough pronunciation like a champ!

- Stickers: These have already been plastered all over his face.

- Food: This is more of a birthday gift to us, but he's been enjoying cocoa puffs and spaghetti lately, even to the point that he will walk to his chair, sit down, and request them. Quantities are small, but requesting food is always a big moment for this kid.

- Baby toys: wait, oops, these aren't his. But the new apartment means they're out on display for Elise, so he is thrilled to rediscover old loves.

Baby nostalgia aside, reading and spelling are fun activities for him lately, and he chooses those all on his own so we are thrilled he is so enamored with learning to read. And thank you to everyone who helped him celebrate!

Some video of James lately: