Benjamin is two weeks old today already! Where has the time gone? Greg and I are starting to get a little antsy as more time goes by, hoping that a heart comes sooner rather than later. Especially as Ben starts having a little more trouble keeeping up his O2 sats.
His weekend was for the most part, stable. They restarted his feedings at a very slow rate, given his history of necrotizing enterocolitis (NEC). He seems to be tolerating the feeds OK, and his Xrays have show no signs of any bowel problems. I spoke to the doctor about the risk of the NEC returning considering his heart perfusion has not improved. He stated that the benefit of oral feedings prior to heart transplantation surgery far outweighs the small risk of the NEC returning. So I feel a little better about it, although still worried. They started him on O2 yesterday because he kept dropping his O2 levels, and forgetting to breathe. This has seemed to help somewhat, and his levels remain a little more stable today. They also gave him some Lasix yesterday, which is a diuretic (water "pill"), because his feet were getting puffy and they thought that maybe some degree of fluid overload was contributing to his labile O2 levels. Today his feet look better, so maybe the Lasix helped.
Ben had a repeat echocardiogram on Friday, which again showed that his right ventricular function remains subobtimal. Not necessarily worse, but no improvement. This is not surprising, but again confirms that transplant is his only option. Please pray that a new heart arrives soon. I must say that I am getting a little more worried about him hanging in there as more time goes by, but we obviously have no control over any of it! Which for two physicians and control freaks is a little challenging.
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