Positive Progress

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 

Comments

Post a Comment

Popular posts from this blog

A Few Changes

Image
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 ...
Read more

A Good Day

Image
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...
Read more