First time on his feet in 13 days🥳💖🎉🥰❤

Greetings Marsh had a sleepover with his dad last night so I could gather my own strength (and sleep in a bed for 6 consecutive hours.)

They did ok but Marsh definitely missed me. I felt tremendous heartache in leaving him but needed to for my own well being and theirs (his dad and him).

Marsh desatted into the 60s again overnight. He is holding steady without the o2 and his heart rate has improved by 10 beats per minute.

Nothing more to report otherwise (which is a good thing in this place.)

Our bodies may be in Boston but our hearts are definitely home in New York 💖

Marsh will be stepping out to 8 East or West today if all goes well.

Marsh had a quiet night until another 4:50 a.m. desat

He was oxygen free > 4 hours post cath with sats in the upper 70s-low 80s.

He watched movies and ate & drank very late into the night (or early morning.)

🤞 heading to 8 East or West today

Waiting for confirmation of the pacemaker surgery… and to see if AFib and arrythmias return. He is off of all of the anti-arrythmic meds…

May each and every wish come true! Counting the seconds until we can celebrate with you!

Cath Dr. Esch and Friedman met with us at around 4:30 p.m. and 5:00 p.m.

Forgive me for the delay. I am still trying to process:

Marsh is comfortable and resting. We napped then watched The Grinch and The Cat in The Hat.

He is extubated.
He is in moderate heart failure.
He has moderate pulmonary vein stenosis.
A (significant) seven ounces of fluid were drained from the right lung.
The left pulmonary veins were nearly closed off entirely.
The right pulmonary veins had narrowed so significantly that Dr. Esch placed a larger stent.

He also has AVMs out of the right lung which are interfering with the relationship between his heart and liver.

He had a collateral artery off of his jugular that wrapped around to his neck that was coiled.

He is still in junctional bradycardia rhythm.

The Glenn pressures are elevated but “should come down as fluid comes off.”

The plan is to keep Marsh comfortable and manage the pulmonary vein stenosis with more frequent caths as long as the veins hold and also attempt to get all parts of his precious heart working together with the help of the pacemaker.

The team has determined that moving forward to surgery for a pacemaker is on the agenda. The time is yet to be determined.

Please, please, please keep Marsh in your thoughts, prayers, and hearts❤

They are now dilating the left veins and will be wrapping up in the next hour or so.

Then we meet with Dr Esch (the cath lab doctor)…

And finally see Marsh once he is settled on 8 South

More dilating of the veins