Sleeeeeeeep without the need for lots of narcotics
Steele is looking great from both the medical side and parental side. A new conversation has started since his weight gain and general stabilty. There are two tracks to follow at this point since his heart function has made sich a significatnt increase in his health. First option: Keep him on the same track he is currently on and move him out of the CVICU and to a floor that does not have the eyes on him at all times. Second option: This requires a bigger picture thought process. Start backing off his Milrinone (Heart Function Meds) and see how he reatcts. This is a very slow process, and at anytime it becomes an issue like high heart rate, you stop that train. We could eventually move him back to the RMH until a donor organ becomes available.
The philosophy and general thinking is this: Get Steele off a cental line to prevent a possible infection, so all his medications can be taken orally, therefore we can get him out of the hospital until the organ becomes available or he is ready for the second "Glenn: surgery". This does not mean leaving the hospital, but giving him a life outside of the hospital. Steel will still continue his evaluation until the cardiology tream feels comfortable about sending himback to Doernbecher.
This an interesting place to be for Steele and us. We have made so many struggles without a ton of decisions, but now we have two choose from if he can handle a transiton--History shows that Steele has not done so well with these kinds of changes, but his heart function has improved. Day to day, one thing at a time.
Till next time. We love you all for following our journey
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