A Few Changes

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 the coverings were removed) 

Over the past couple of days, Weston’s nausea has been ongoing. Through his nasal feeding tube (NG tube), they have been attempting to give him not only some oral seizure meds, but PediaSure as well for nutrition. It’s not been going so great. Last night, before bed, Weston threw up at least four or five times more times, and then again in the middle of the night. And that’s on top of the bouts from earlier in the day and day prior. At the moment, all nutrition feeds are on hold while the different teams look into possible reasons and ways they can help it stop. 

In our group care team meeting yesterday afternoon, we had further confirmation from Neuro that we’ll be staying the course for now. So no new meds to add at the moment. Genetics advised the first of the two blood tests came back for Weston. Results were normal, so it did not add anything further to their knowledge or give them anything new to act upon in his case.

During our meeting, we did also discuss what the plan for discharge may look like. The doctors anticipate we’ll be here at least into the weekend, or even the start of next week. The Pediatric doctors (as well as Neuro) tried to help prepare us for what challenges we may be facing in going home. Because of the nausea, coupled with his heightened levels of drowsiness on a consistent basis, the Pediatric team advised we likely will be going home with the NG tube still in place. This would be to ensure we can continue to give him his meds and ensure he gets enough nutrition. He could still eat with it in place, but it would give us another way to access his stomach. The NG tube could be in for a few days, weeks, or if needed, possibly longer. For prolonged needs, they said it’s likely they would then have a G tube inserted in place of the NG tube - so a feeding tube surgically inserted into his stomach with an access point on his stomach, above the belly button usually. That instead of tube threaded through his nose. But that all depends on how Weston progresses from here.  

Now when discussing Weston’s increased levels of drowsiness, there are several different thoughts. First, it could be the medications. He’s getting a lot and they were added in pretty quickly, so his body could be struggling to adjust. Second, the levels of one medication in particular have repeatedly come back as high in the lab draws. Meaning his liver may not be metabolizing it at the rate most people do. So higher levels could contribute to the tiredness. That dose continues to be adjusted with each new lab draw. Third, his body is still trying to recover from the ramped up seizure activity he was experiencing when we came to the ER. Fourth, the seizures have altered his brain, as we see in his abnormal brain activity scans, and this may be a new normal state for him. We might get to see little bouts of Weston here and there, but again, there is concern things have been permanently altered. Or fifth, a combination of some or all of these factors. We really don’t know. 

At the moment, our biggest prayer requests are his nausea, that we would see a settling of his stomach and an ability to keep the liquid nutrition (and meds) down. His levels of drowsiness, that he would become more alert and responsive on a more consistent basis. And then his ability to start taking nutrition himself. Until the nausea subsides, and his alertness picks up, we can’t attempt giving him any food to eat directly. Ultimately, that is where we need to get back to in order to even consider having the NG tube removed and remove the possibility of a surgically placed G tube. 

And then overall, we are still praying for even better management of his seizures and that Weston’s brain has not been, and will not be, permanently altered or changed as the doctors believe and have seen in other cases of such heightened seizure activity. 

Thank you all for standing in faith and prayer with us! 

- Julie