Weston

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...

Yesterday was certainly one of the best days we’ve had so far. Weston started scheduled feeds yesterday and was able to keep everything down without any problem. No nausea!! And we are getting about 50% of the nutrition volume the doctors say he needs. We had several more periods of alertness through the day and even got to venture out of our room and hang out on the outdoor patio for a few minutes. And then last night, we sat up on our own and played for almost an hour.  And, perhaps most exciting at all, Weston voluntarily ate some graham crackers and drank some juice. First time he had eaten anything himself in over a week!! We are optimist home may be soon within our sights. Hopefully just another day or two here. (Eating something ourselves for the first time since admission)  What we are looking to see now is our ability to take full feed amounts. Once we hit that marker without nausea, then we should be cleared to go home! Likely we will be going home with the NG tube s...

Made some positive progress yesterday. We had the opportunity to get up and out of bed, try a few steps, and then got to play with drawing on the room’s white board. Weston is extremely weak though and very shaky. Reminds me of when we were in the cardiac ICU back in 2019 for his heart surgery. But we spent a bit more of the day yesterday awake. So positive signs for sure!!  (Our whiteboard artwork) Now we are still fighting the nausea and at the moment, we are not giving Weston any oral nutrition through his NG tube. The team has advised they would like to see us on full feed amounts without any nausea for at least 24 hours before we may be considered ready for discharge. Hoping we may be able to attempt nutrition again later today.  Still praying, but overwhelming grateful for how far we have come over the past week! Thank you again to everyone praying and supporting us through this. God is so good!  -Julie 

Yesterday, Weston’s continuous EEG monitor was removed. The Neuro team believe they have captured as much data as they can at this point and since they aren’t seeing any more changes to his scans, regardless of the medication fluctuations, it no longer needs to be running around the clock. We were told that typically, after the second or third medication, the benefits seen with any further additions is much less notable on the scans. So it was time to remove the monitors. We still thankfully aren’t seeing any of the major clinic seizures, but the subclinical seizures and abnormal background noise is still ongoing. The team also told us they are going to now hold off on adding anything further and allow his body more time to get used to his current mix. The road to better seizure management is far from over, but in this acute care/hospital setting, they believe this is as far as we can go for the time being.  (A closer look at all of the individual monitoring points of the EEG when ...

I'm not quite sure where to start this update. There has been a lot going on the past few days and I'm clearly behind in sending out any news or updates. But I will do my best to help go through some of the more notable points. The biggest point to address first is that Weston is still having seizures on a daily basis. Even with now three different seizure medications on board, the seizure activity is still going on. The biggest difference now, however, is the majority of his seizures are considered sub-clinical. This means his body is not exhibiting external signs of the seizures that we can see (that would be clinical seizures where we would actually see shaking, staring, collapses, rigidity, loss of consciousness, etc.), but the EEG still shows ongoing seizure activity. We are at this point now on three different seizure medications and the scans are showing no marked change or improvement. The neuro team said they are looking at adding a fourth medication sometime today.  N...

(UPDATE- For more current posts, please click on Weston’s name at the top of the screen)  I never thought I would ever have cause or need to start another one of these. But I guess here we go again...  Before I get into where we are and what’s going on currently, I’d like to start with some history. On December 8, 2020, our son Weston started having seizures. Initially, he started with myoclonic seizures, often referred to as drop seizures. Usually from standing position, Weston’s body would go completely limp and he would fall to the ground. Hence the term drop seizures. During these initial seizures, he did not loose consciousness.  Recognizing immediately that something wasn’t right, we took Weston to Carson Tahoe’s ER. They approached his case as just his having balance issues, did a CT scan to confirm he didn’t have any sort of residual head injuries from his falling, and send us on our way. A neurologist in Reno we had seen years past was called for a consult while ...