We’ve been in the hospital again since the family day long weekend, pretty much right after I posted the last post on here. I’ve been hesitant to post anything since because I haven’t been feeling like we’ve been getting any good news but I feel bad that nobody is getting any updates. Sounds like we’ll still be here for a few more weeks. I’ll try to make the Foster update quick and then we can move onto fun and cute photos and videos 🙂
So Foster was asked to come back to the hospital for a few reasons. He was continuing to have daily seizures, long seizures and requiring rescue medications daily and sometimes multiple times daily. So they wanted to have him do another 24 hour EEG to see if his seizures had changed at all and then if they had, maybe that would steer us in a different direction for medications. The seizures have not changed from his EEG scan and so we have not been sent in a different direction with medications. We’ve now added in additional daily medications and have been told by our neurology team that it is very unlikely at this point, given the number of medications that he’s on and the number of medications that he’s been on in the past that have not helped, that we will be able to gain control of his seizures through medication. Not that he will be taken off of medications or that they will stop trying new medications but just and FYI that they don’t anticipate that anything will help much at this point. They can also confirm that Foster has suffered brain delays as a result of the multiple long seizures that he’s had, though they aren’t able to say at this point what level they project him to function at. They typically need to plot two points on a chart to be able to see where he may function in the future and at this point those points are both side by side. He’s also suffering with what they call a failure to thrive, given that he has not grown since he was two months old and at four months (next week) is actually smaller then he was at two months. He’s been on a monitored high calorie diet, set up by a dietitian, to try to increase his growth and has so far still not been growing well. The pediatrics team and neurology team have contributed his lack of growth to a couple of things, one being that he jitters all day long as part of his underlying neurological disorder and the second being that he had developed stridor making him work really hard to breath. Then additionally, he’s been having an increase in seizure activity. So all combined, he’s just burning way more calories then he can possibly intake at this point. He’s also been very sleepy from medications and/or in a postictal state following seizures that has prevented him from eating orally so he’s back on a feeding tube. We’re told to plan on being in hospital for a few more weeks, of course that will all depend on Foster and how he’s doing. He had a surgery done on Tuesday to help open his airway. The idea behind that was that he wouldn’t have to work as hard to breath. Not that it will be the answer to all of his growth problems but hopefully that will eliminate one of the contributing factors. Hard to say at this point if the surgery made it any easier for him to breath because of course things are still swollen and can worsen slightly in the meantime.
From a seizure perspective, the next step for Foster will be starting him on a ketogenic diet which has some good results helping people with forms of epilepsy that are resistant to medications. My understanding is that it’s a high fat, low carbohydrate, moderate protein diet that manipulates the body into a state of ketosis where the body is burning fat instead of carbohydrates. This will replace the glucose in his brain with ketone bodies and for whatever reason this process can sometimes stop the brain from seizing or stop if from seizing as often. He would be working with the neurology dietitian closely to ensure that he’s getting the nutrition that he requires for growth while on this diet. And if he has success on the diet he would be on it indefinitely.
But here’s a cute little video of my jitter bug, jittering away to the music 🙂
So, I brought Clay over to play with his little buddy Liam on my way into the hospital and they sent me the cutest videos of Clay and Liam playing together! I had to share….I just think it’s the cutest thing when these little guys play together.
How adorable are these little dudes!
Then the next day Brett was at the grocery store with Clay and they ran into Nada and Liam there. Apparently both little boys (Clay and Liam) were having meltdowns and were really happy to see eachother. Nada said that Liam was really upset and then she heard him saying “Day…Day” which is how he says Clay and she looks up and Liam was walking over to Clay and grabbed his hand. Then they just stood there holding hands hahah. Brett said afterward when Nada and Liam were walking away that Liam tried to pull Clay with them. Too cute.
Clay’s been going to the daycare at Brett’s office and taking the train into downtown with him while I’ve been in the hospital with Foster. Sounds like he was adjusting pretty well to daycare and having a pretty good time by the end of the first week.
Okay now for random pictures taken on my phone over the past few weeks!
Me and Fuzzy hanging out in our hospital room.
Tummy time for Foster…gotta work on that neck strength 🙂
The nurse brought Foster a swing! Way better then the hospital crib.
EEG day….I always think he looks soooo cute having an EEG haha. It’s heavy for him though and difficult to move him around with lots of stuff attached to him.
The boys in their team Canada gear.
Clayman…..he’s a big fan of showing off his belly!
Cuddles with Daddy.
The best way to eat dinner.
Mommy’s night at home with Clay (I get another one coming up this weekend!)
Not so sure about yogurt…
New hat, sooo cute! Thanks Gran 🙂
The the last one I think.