Home- Maybe??

We are so close to being ready to go home!! Weston is tolerating his full feed amounts, we haven’t had any nausea, and he is spending a greater part of the day now awake and playing. So we try to have him out of bed playing, sitting in his chair, talking rides around the halls, or drawing on the whiteboard as much as possible. And he has been taking more and more bites of food and drinking more on his own as time is progressing. So today, the nursing staff has been giving us more time for him to try and eat/snack before giving him feeds through his NG tube. And most importantly, we are still not seeing any relapses with the clinical seizure activity. Which is, in and of itself, a miracle. Just over a week ago, we couldn’t go more than 5 minutes without his having one. 

Now one thing that is of a newer concern, Weston is having some significant body tremors. Whenever he is up, his whole body seems to be constantly shaking. And more so then just a weak shakiness you would expect from his being bed bound for over a week. We are waiting to hear from Neuro if it’s possibly medication related, or if it may be a result of the seizures. I’m praying that as he get accustomed to his meds, starts getting back to normal routines and building back his strength, they will subside. But we don’t know yet.  

But overall, with how great Weston is doing, we have been talking with the doctors then about plans for going home. It sounds like earliest would be late today, and latest would be Monday for our hospital discharge. It all depends on our getting set up with everything we need (meds and feeding supplies) to then go home. And I guess things move a little slower on the weekends, so that may be why it could be as late as Monday. 

This morning I went through a training with the nurse regarding the NG tube. How to insert it should we need to replace it or if it’s pulled out at some point, how to administer medications, how to work the food pump, and general overall care. Praying we won’t need it for long, but it will be nice to have a way to ensure his meds are taken in their entirety every time while we’re working on getting his eating back up. 


When we took a stroll through the halls earlier today, we came across many of the nurses we’ve had through the week. They were all amazed at how great Weston is doing and celebrating with us on how far he has come. It definitely feels like we built a little bit of a family here. And one doctor did tell us we are one of those patients you don’t ever forget. I time and time again thank God for this team and His guidance in bringing us to here and to the right place for Weston. But I am certainly ready to go home. And I know this little man is too!! 

-Julie

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