Within an hour or two For Boston

Marsh had another restless night here. It seems the hours from midnight on compound the troubles which brought us here. His heart rate dips. He throws off the o2 mask and his sats tumble. And he cuddles in tighter. Ever and always my nighttime barnacle… He knows we will be traveling by ambulance to Boston. […]

I was afraid I would miss it. Thank goodness I didn’t💖

Marsh christened Dr. Smith with a new name last night when Dr. Smith swooped in to visit. Today Dr. Super Smith and Dr. Egan appeared together with their echo machine. The right pulmonary veins are problematic again and Marsh has a significant plueral effusion. And there is the rhythm problem. And there is the heart […]

What I can’t cure I can carb! Especially since I feel like I can only meet 10% of my baby’s needs right now. Marsh had a so-so night. Things were rough from midnight until 4 a.m. And he had to have 2 pokes. He is drawing and mostly comfortable now. ❤

Bad night and another desat…Marsh woke with a severe headache at 3:30 a.m. and his heart rate dipped to 51 around 4 a.m. Tylenol helped the headache but then his last iv went bad so they had to poke him 4x. His heart rate has stayed in the 50s since. Bnp is up to 560+/-. […]

Dr Smith stepped aboard the SS Marshall heart disease “ship” and determined this was not a case of hypoplastic left heart and was a case of heterotaxy. Our only goal is to keep the ship steady despite waves of rapid change. It has been a long five years and I would do it all over […]

This has been the hardest hospitalization yet. I have not seen him this sick in all of his life. I can officially say that this “expensive, noisy hotel without a pool” is breaking our hearts. So please pardon the silence of the past few days.. For almost two days Marsh’s heart was > 200 beats […]