Category Archives: Heterotaxy, Pulmonary Atresia, Right Ventricle Dominant Unbalanced AV Septal Defect, Total Anomalous Pulmonary Venous Return

Too Surreal For Words

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We have new worries. But we have a plan. And since we all love this little boy sleeping peacefully as I unwind my worry into this poor laptop, it’s long overdue that I let you in on both. Please forgive me. This is soooooooo much. Since I have yet to discuss the details with Marshall’s […]

Infectious Giggles and Ridiculous Optimism

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Marshall won’t eat but he is happy.  We are still doing this weird dance.  Docs think he is making process (he is back on the floor instead of the icu) but I think he is moving sideways. He is on oxygen now.  And he is still so  awfully sick.  His eye sparkle is dull.  He […]

“It’s OK to cry”

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We’re at dinner near a restaurant less than two blocks from the ICU where my baby is laying. It’s 9:30 at night. I don’t have enough words to express how thankful I am she’s here. We’re talking about recent events and changes in Marshall’s appetite: the strokes, the post stroke seizures, the breakthrough seizures from […]

Sunday Morning Coming Down

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Marshall will not likely be stepping down from the ICU today. Yesterday he woke quite happy and as the day continued, his mood declined. By the afternoon he was plain grumpy. By last night he was nearing the inconsolable state which landed us in Upstate. Last night’s nurse’s instincts were as fierce as mine in […]

Worth the wait

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I held Marshall once since he came to the ICU thanks to the brain ekg cap.  That came off today. Annnnd I am FINALLY ROCKING, DANCING, CUDDLING, AND HOLDING our boy 🙂 CT today to check for post stroke issues Mri series Tuesday Holding my breath in the meantime… And so thankful.

CT Images

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Dr Friedman stopped in to let us know the transplant surgeons have reviewed the images from Marshall’s CT scan yesterday. Open heart transplant surgery is possible if Marshall is determined to be a good candidate. The teams meet and present again tomorrow afternoon to complete Marshall’s transplant evaluation. We may find out more after that.