Cutie

I

Another week begins

Day 20 update:

Nothing to report.

The effusions continue at the same rate. The tubes have been clogging so he had his chest tube replaced TWICE in the past 3 days. The fluid leaking now is red with blood because his body hasn't had time to heal. He is sore, cranky, and quite visibly sad.

The standard treatments haven't worked so we don't know what comes next: consulting today with other hospitals to come up with an idea.

No news is... news?

James is back in his room and resting. Ideally, we wanted to find a cause for his pleural effusions so we can know how to stop them. Today's cath did nothing -- ok, almost nothing -- to provide those answers.

It did rule one thing out: the pressures in his Fontan system are not out of whack. 

Given that the leaking increased in recent days, everyone expected to find that the Fontan was failing: we expected the refenestration to be inevitable.

Instead, his Fontan looks stable! 

(Current hypothetical speculation is now focused on pulmonary vasculature, pending analysis of mPAP, PVR, CO, SVR, RAP, etc...). 

And that's the news... 

Enough? 

How would you react and respond:

Realistic: No news means we haven't found anything news worthy; check back tomorrow...

Zen: There is no news; there is only what you make of it. 

Optimistic: No news is good news.

Pessimistic: No news? Seriously?

Relativist: No news is all the news there is, so it must be good enough.

Scientist: No news means our data is insufficient and our hypothesis has lacked clarity and focus; more lab testing needed!

Parentist: No news means no answers, but no bad news either, which is good, and we've avoided a big, drastic intervention for the time being, which is also good, so now we sleep this off and see about getting James to the hospital playroom and FaceTime with the family tomorrow 😘

133

133 days in the ICU, throughout his 4 years of life, so far...

This week has taken an unexpected turn. The effusions, minor when we arrived 2 weeks ago and basically gone last week, are back. Even though he's still in the ICU, still using all the easier treatment methods available - they are simply not working. The leak is back and it's gotten worse.

Thursday's plan is still the same.

But we are bummed... because this means the chance that Thursday's catheterization will be minor has just plummeted. He'll probably need the refenestration that we hoped to avoid. The side effects are severe, the medications to manage it are nasty, and it still may not be enough.

If this surgery doesn't fix the problem, next steps are even worse. There's no good option, only less-bad-than-doing-nothing options, with higher and higher costs to the rest of his body.

Mostly we just want our boy to be happy, and know he's loved, and enjoy his life for as long as possible, and not spend it stuck in a hospital bed. 

So we're frustrated, and sad, and lost, and angry.

And no, we don't want to answer questions. We do want lots of support for James as he hopefully gets through this latest bout with as minimal intervention, hospital time, and strain to his body as possible.

July 14 is the worst date

It's been a confusing week here in the PICU, because there's so much happening yet nothing is happening.

James' pleural effusions have pretty much stopped. He is already being weaned from the medications that helped dry up the leaking, and moving towards possible discharge this weekend if everything stays dry as he transitions off meds and back onto solid food.


But...
It's not as simple as "now it's here/now it's done". The pleural effusions last summer were a sign that his body wasn't yet adapted to the Fontan circulation which was the entire point of the surgery. Their return this summer means that his body STILL isn't working optimally with the Fontan system. The pleural effusions will be a recurring problem unless we make a change.

His team has therefore scheduled him for a cardiac catheterization next Thursday. Even if he is discharged before then, he'll be readmitted to the hospital on July 14. (Exactly one year from his initial Fontan! July 14 is officially my least favorite date.)

Best case scenario, they decide during the cath that everything looks good enough to simply try a lowfat diet as sole lifestyle change to keep the effusions from returning.

Any other case - really the only other option if things aren't totally great inside - is a refenestration of his Fontan. This means poking a hole, adding a shunt, opening a permanent connection; decreased oxygen circulation; and some nasty lifelong medications involving super sucky stuff like daily shots for the rest of his life.

We don't want this. James doesn't want this. Let's hope we can avoid it!

Super excited about Legos ❤️

What a view

A quick thunderstorm outside brought us this view from James' hospital bed 😊

Also, the results are in: the fluid is chylous pleural effusions again. His chylothorax is back to claim another summer. Hopefully it's a shorter fight to recover this time!

Didn't want to do this again

Yet here we are.

James had his regular checkup yesterday, and the echo showed some fluid accumulation. An X-ray and a sonogram later, we were sent straight to the Picu to check in and prepare for a chest tube.

He spent a reasonably peaceful night, unhappy to be here but adapting probably better than most 4 year olds would. Diuretics throughout the night were meant to see if a tube could be avoided, but they didn't reduce the fluid, so a chest tube goes in today.

We still don't know how much is leaking, from where, or what the fluid is. More testing today before we get answers about what we're dealing with here.

Not much changes in the Picu in a year:  all the same faces have been greeting him back.