I didn’t too much celebrate the arrythmia break knowing Marsh as I do.

In fact, I asked a family member regrettably what he would do next…

As for the bad night: Marsh had been mostly stable and sleeping. But a mess.

The night brought only 6 hours of relief from the arrythmia.

Then restarting of the cardizem. Then a series of desaturations.

And now high flow oxygen following an xray which showed a focalized spot on his lung.

The good news is Marsh fought like a UFC champion against the oxygen mask… it took 4 adults to wrangle him into it.

Labs are ok. Liver and kidneys are recouping from heart stress. Bnp is 375 ish and trending down 🤞.

I reached out to Dr. Friedman about this situation. Now waiting to talk to Dr. Smith and Marsh’s dad.

The arrythmia broke.

A fluke yet none the less scary desat and

poof:

His resting heart rate is normal.

Dr Smith is at a Binghamton outreach today and not here again tomorrow. On call cardiologist and another cardiologist from the Syracuse team evaluated Marsh via echo this a.m. They determined that the atrial flutter is somewhat settling down. It is not gone but not as bad as it is without the iv cardizem on board.

Soooo no cardiac conversion (electrical stimulation ) at this time. They all agree to pause until they can determine the best way to treat the atrial issues. I think the team here is hopeful the right medicine combination will do the trick.

I reached out to Friedman and encouraged him to lean in.

Rounds happened. They are adding another antiarrythmic to the home medicine regime. Marsh is presently comfortable and using the tablet (gigantic progress forward in comparison to yesterday). They will draw labs and place a new iv site because the first site was causing tremendous and constant pain.

He is allowed to drink finally and 🤞 we can feed him soon to try to get some nourishment in…

Please keep sending those big thoughts and huge prayers

Hugs and love and so many thanks ❤

The plan was to correct the atrial flutter via electrical means but the plan has changed some for a while.

Team is reconvening and 🤞 reaching for Friedman as well.

Marsh has been with us 2,099 days (yes I am still counting)💖

One year ago today we were bringing him home from Boston post 3rd surgery.

92 days until he turns SIX!🥳

The vicious ferocity of this heart disease ravaging our precious boy can only be described as a heart storm.

But I am neither a cardiologist or meteorologist.

I am just his mom trying to assist, process and digest. And I risk rambling…

Marsh did not tolerate the cardizem wean well yesterday. And his fluid balance was/is scarily overloaded. And his belly was/is really sick.

I will spare the details and leave it at this: His heart is very sick. His old nemesis heart failure has returned. According to labs, his bnp is elevated from 236 in December 2017 to 400 this a.m.

Also, labs indicate his kidneys and liver have been tremendously overworked.

To quote our boy (from three days ago): “it isn’t fair!”

And I would apologize for not sharing better updates but I am not sorry. I selfishly tend to just hold Marsh as much as I can and help him be as comfortable as possible.

The rest can wait.

As for that – the rest – Dr. Smith returned from out of town and he thankfully evaluated Marsh late yesterday. Dr. Smith performed an ekg and echo, restarted the cardizem, and formulated a plan to get Marsh to a “normal” heart rhythm.

Because of all of this, Marsh has been NPO since yesterday morning. But the time has just flown.

Today lies before us already.

The Upstate team thinks they can solve the arrythmias with electrical stimulation.

I think climbing back into the hospital bed to cuddle Marsh as long as possible is a great idea.

Please send good thoughts, prayers, whatever you believe. The strongest person I have ever known is fighting with everything he has got left in ways no one should ever have to❤

Today has been a very difficult day for Marsh. His antiarrythmic wean has not been going well.

We are waiting to see Dr. Smith still.

I will update more later.

Please send those good thoughts and hefty prayers.

Hugs and love and so many thanks ❤

Not much to report. Marsh is sleeping or resting comfortably-ish though he is pretty grumpy.

He is allowed to eat and drink again.

Still have not spoken with cardiologist about echo or ekg. They just started iv digoxin to act as a bridge between the antiarrythmic and where he needs to be.

And they titered down antiarrythmic. His heart rate is in 130s +/-.

They have found some other problems with essential organs.

Now is a really great time to send up some big strong hefty good thoughts and gigantic prayers and get everyone else to as well.

Hugs and love and so many thanks ❤