We had our “home going” care conference today.  Discussions were focused on what it takes to get the boys home, what home might look like, and establish some goals and a potential time line.

It might be easiest to discuss where we are now, and where we want to head.

The boys are using pumps right now.  We want to provide any non oral milk/formula using a gravity tube feed.  This mimics the speed of a bottle better, and is one less piece of equipment to maintain and pay for.

The boys are taking some of their food by mouth, but not enough.  We ideally will try to get them to 100% oral.  But a reasonable goal is 70%.

N is on oxygen.  He can go home on oxygen, but we would like to try to help him kick this little habit.  We are doing a lasix/diuretic to help him get rid of a little fluid that might be bogging him down.  We’re also going to try to further reduce his seizure meds.

Speaking of seizure meds…N is currently on Keppra and Phenobarb.  Our plan is to keep the Keppra as is, but work on reducing or even eliminating his Phenobarb.  Hopefully, he will remain CLINICAL seizure free, and gain more alert time.  Plus…then he’ll go home on one medicine instead of two.

L is on Keppra, Phenobarb, and Topemax.  We’re going to take him off of Topemax.  Same idea as with N, only in his case he’ll hopefully go home on two meds instead of three.

With all of that in mind, we will use this week and the weekend to reduce the seizure meds, and treat Nolan with Lasix.  After all of that is done, we will trial him on room air again, and use next week to reassess both boys.

As for a projection for when we will go home…I predict we’re looking at somewhere between two weeks to a month.  Hopefully we’ll be home by Thanksgiving!!!  Sooner is preferred of course.

This entire team was very supportive of our preferences and goals.  And everyone really seems to be on the same team.  That has always been true with these care conferences, but having the spirit of today’s meeting being focused on HOME rather than their condition felt really good.

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