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 […]

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 […]

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 […]

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 […]

So they rounded. Plan is to drop ng tube, start the slidenifil & nutrition (dairy free formula with lipids), decrease nitric (went back up to 5% because his heart rate dropped to 60 bpm when they shut it off), try to dial back the vent (he went from 40% before we left last night to […]