Some Updates

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. 

Now one challenge we face with seizure medications in general (aside from the side effects), is many of the different options come only in an oral form. They simply aren't made to be given through an IV. But, Weston is not at a point where he can take anything orally himself. He is very seldom awake or coherent. And when he is partially awake (eyes half mast, if even that), he is often overly agitated and frustrated. (And so much so, he has blown his IV line now twice in fits of frustration. That hasn't been so fun. With all of the lab draws he has to have - usually every six hours to verify medication levels - they had to call for an ultrasound machine in order to help find a vein they could use for the replacement IV both times.) So in order to give the doctor's more medication options, a nasal feeding tube was inserted Sunday to give direct access to his stomach, regardless of his being awake or not. But just like his IV, he has now pulled that out twice.

With his ongoing seizures and heightened levels of intermittent agitation, and the concern that he may again disrupt his IV or pull his feeding tube again, Weston is on direct watch 24/7. There can never be a minute he doesn't have someone awake and bedside watching him. Meaning at night when I'm sleeping (or supposed to be sleeping), a nurse or staff member must be present in the room watching him. Although the reasons why we've gotten to this level aren't so great, it is helpful knowing someone is able to respond immediately should anything happen while I'm sleeping.

(Half mast eyes)

Now with the feeding tube, the doctor's have been starting to give Weston some nutrition supplements (as opposed to only getting fluids via IV). But his stomach has been having a hard time adjusting and he started throwing up again on Monday. (I say again because we had several bouts of nausea in the ER and through the day on Friday.) We also had another bout this morning, but praying we will be better in that department as the day progresses. 

On Saturday, I had the opportunity to meet with two geneticists here at Stanford. They took the time to go over in even more detail some key points of Weston's microdeletion and if that may have played into his risk factors for seizures. Truthfully, they don't know. They believe the deletion could have been a contributing factor, but there isn't enough data for them to be sure. You see, in all of the literature and case studies and test results they have access to (from worldwide medical databases, not just Stanford's systems), there is not one other case of someone with Weston's exact microdeletion. There are some that have some similarities, but no match to his exact genetic make up. So ultimately, Weston is truly one of a kind. 

Slight deviation - for those who may not be familiar with microdeletions or what that means , I'll give you the analogy we've heard several times from different genetics teams. Imagine a large set of encyclopedias. Tons of books, countless pages in each book, and each page filled with countless words. Half of your library is a gift from your mom, and half a gift from your dad. And your body then uses these books to determine everything about you and helping you operate from day to day. Those books would be like your chromosomes. Now in Weston's case, it is like someone took one of his books and pulled out a handful of pages from it. So his body has to still work out how best to operate while missing some pages in one of his encyclopedia books. In some areas, the missing pages aren't as apparent, but in others, it is more so. 

In my meeting with the genetics team, they discussed doing some more lab work on Weston's blood to look even closer at the pages (or genetic coding) he's missing. Although there are pages missing, they also want to look closer and see if perhaps there are some different spellings, if you will, to some "words" as opposed to what they usually see. And they'll be doing an epilepsy panel to see if they can determine at a molecular level what medications may be more effective for him and which less so. 

One exciting update to share is both Sunday evening and Monday evening, Weston was more so awake for almost two hours each time and not upset, agitated, or frustrated. Sunday, I took advantage of the time to then cuddle with him (up to this point he would get so irritated to even be touched - his blanket really being his main source of comfort he wanted and the only way we can often get him to calm down). And then last night, he was not only alert, but laughing/smiling and playing with toys. We have a small container of Little People the hospital provided is with while we are here, and Weston had so much fun putting them in and pulling them out and then playing with opening and closing the lid of the container. It was so amazing seeing a little glimmer of our Weston again. And it is definitely what I'm holding on to that we'll get back to even more fully one day.

(Sunday night) 

(Monday night- look at that smile!!!)

(Playing with toys!) 

Later today, we have our first full care team meeting scheduled with all of Weston's doctors. That includes Neuro, Pediatrics, and Genetics. We'll all get to meet together at one time and discuss as a group what each specialty is seeing, what their targeted goals are, answer questions we may have (Landon included as he'll get to join via Zoom), and discuss what our next steps from here will be. I imagine we'll address expectations for our length of stay (very likely another several days at the minimum) and what markers we may need to meet in order to even start thinking about going home. 

I do want to thank everyone again for the constant prayers and words of encouragements we've received while we face this battle. It has been more than overwhelming at times, for sure, but having the support and covering of so many has made all the difference in the world. And God has definitely been bathing us in His peace. We're continuing to look to Him and trusting that in every step, He Spirit will guide us through. And each day, it seems we get another amazing nurse, nursing assistant, resident, or even lab tech, working with us. And they help to confirm that we are in the right place and God is orchestrating it all.  

Until my next update... 

-Julie

Oh, and one thing that always makes me chuckle is not a single person we've worked with has missed commenting on these amazing eyelashes. We've grown so accustomed to them ourselves, but I guess they are are pretty remarkable. Just like Weston.