It is official: they want to extubate.

Please send positivity, strength, big prayers, massively good thoughts, and lots of healing energies that it goes well.

Words can not say how much we want to hold our little miracle.

Hugs, love, and thanks❤

Still waiting on rounds… but he smiled at us!

This boy is the strongest person I have ever met❤

So they haven’t rounded yet. Marsh had a quiet night. He is still quite sedated but managed to #2 some and roused enough to ask for TV.

Sats and pressures look good.

They plan on extubating after rounds. Please, please, please pray, send powerful thoughts and send strong energies

Love, hugs, and gratitude ❤

Please help Marsh let today be the day they get him off of the vent

So many thanks, so much love and big hugs❤

Nitric is off. Vent is on 100% o2 but he is still initiating his own breaths. The giant step before him is to wean down the o2 and get off this vent.

Please please please pray it works.

He is going on to tordol and tylenol as well as zofron.

He is in 1st degree heart block (sinus rhythm ) but the team believes that will reverse and there are things they can do if need be.

Please keep sending those energies and good healthy thoughts. This vent needs to go.

Love, thanks, and hugs❤

Dr. Friedman is relieved Dr. Baird did not try to force the fontan completion. Dr. Friedman is pleased with the progress Marsh has made. Friedman reassures the extra time on the vent will not harm Marsh unless Marsh is still on it at the end of the week. And if he is, there are things they can do to ascertain what’s going on inside of our boy (likely another cath.)

They will be rounding soon. Please pray they can get the nitric off. Please pray for strength and healing for Marsh.

Please send some really strong, really good energies for our boy.

So many, many, many thanks and so, so, so much love❤

Not much to report.

Plesse send superpower prayers, thoughts, or energies that this vent goes away.

He is still intubated.

He wakes up terrified and shakes his head “no.”

His numbers and labs are good.

Please. Send. Every. Good. Thought. You. Can.

We have to get this vent out. Five days without him awake and two days with him awake enough to convey how awful having the vent is more than too much.

The catheter is gone and Marsh is diuresing well with lasix and diauril. He is stable though the sedation meds are impacting some of his functions.

He is also scared. And cries (silently because of the vent tube). He understood when I explained the very short, very limited version of the hell he has been through.

I can not hold him to comfort him and I think a piece of me dies every time I see the look of sheer terror in his eye.

The good news is he rebounds when he is ticked off.

He is initiating breathing more on his own with the vent.

He “looks great” according to the rounding team. They are weaning down the nitric overnight and intend to extubate tomorrow.

Please. Send. Every. Good. Thought. You. Can. Please keep the prayers and good healthy energies coming.

Hugs and love and soooo many thanks ❤