8/19 Update
Over the weekend, Patrick got intermittently and episodically fussy. Because fussy is how he shows cardiac problems, they gave him a thumb IV and put him on a .5 dose of milrinone to see how he responded. He improved, leading them to believe it was cardiac-related, so he had an echo on Monday. His LV (left ventricle) function looked unchanged. His surgeon and the cardiologist rounding this week spoke about maybe doing another heart cath to get an idea of his pressures and RV function.
Yesterday, he took little 20 minute cat-naps and never slept for very long. He has three distinct points on his lower gums and he has been sucking/chewing on cold washcloths for relief, so teething is a factor as well.
This morning, Patrick was happy and wiggly/giggly for rounds, but his surgeon was concerned about his breathing function, which is more labored (a little tachypnic and having retractions), and his heart requiring milrinone is a step backwards.
They have compressed feeds over 1.5 hours, down from 1.75 (the goal is 1 hour). He has finally broken 8kg, which places him just above the fifth percentile for weight, which is excellent news. The surgeon sees Patrick's digestive tract working well, but the cardiac issues worry him.
Shortly after rounds, in the midst of "fighting the tireds," Patrick started screaming, arching, and turning. His heart rate spiked at 202 several times, his breathing hit 85/min, he began having large retractions, and became seriously diaphoretic.
The nurse gave him Tylenol and he finally settled into sleep (or maybe just wore himself out). CV came back to check on him. They have tentatively scheduled him for a cath on Monday to see if there is any intervention they can do in his pulmonary arteries (widen stents, place some on the right side, etc). They will also consider widening the fenestration (hole) in the patch between his ventricles to relieve pressure on the RV, although it will come at the expense of oxygenation (lower O2 sats). His IV has been moved from his hand to his foot, but he will likely get another PICC line for better access before the cath.
Thus, Patrick will likely stay in the hospital for the foreseeable future. I calculated it up today; he is 295 days old and has spent 140 of them in the hospital--almost half his life. We're currently looking into some options for a more permanent place in Detroit to make working and coordinating care of Mira on weekends when Phil goes back to work easier and more stable, rather than waiting to figure things out "when he gets home."
It's hard, and frustrating, but we're managing so far, thanks in large part to all of you, so thank you.
