What a crazy last few days it’s been. I will attempt to properly update you all even though I am sleep deprived. Take a nap, you say? Hah! Impossible to do here. Too many people coming in and out of our rooms. Intercom announcements, floor cleaners and helicopters landing on the roof (we’re on the top floor). Just when I think we have a few hours to catch up on sleep the linen lady comes in. D’oh. And then when I think we’re in the clear after she leaves, the dude that cleans and changes the garbage busts in the room. Double D’oh! And then the random visit from a clergywoman that nearly made me have a heart attack. I thought members of the clergy only showed up to give last rights! Talk about a panicked look on my face. I’d put a sign on the door shoo’ing people away but I don’t want to miss any visits from the neurologist or dietician(s).
To backtrack a little, we stayed at a hotel Sunday night and had a low key evening.
We stuffed our faces with Boneheads pulled pork and brisket, cornbread, mac and cheese, sweet potato chips and salad. Ohhh, yeeeah. We attempted to sleep but Emmett kept flinging himself on top of me and using me as a pillow. He also kicked me in the face a few times and kept tickling my nose with his hair. Morning came early and Emmett wasn’t allowed to have any breakfast. He could only have water after midnight until lunchtime at 11:30am. We managed to cut his pills up small enough to get him to swallow those with just water and then headed off to the IWK.
When we got here they brought us to our (bigger than what I was expecting) room. We have our own bathroom with a shower, so that’s great. Emmett was first given a cage-like crib/bed but we had to politely ask for something else.
Since Emmett gets up on all fours now, he has been balancing himself up on his knees. The only problem there is that he lets himself fall to the side or to the back. He usually catches himself when he falls forward, though! But we don’t need him diving backwards into metal bars in the middle of the night because that would totally happen. At home either me or the bumpers save him. The OT here suggested Emmett sleep in a huge netted zipper bed. It’s the size of a twin bed, so hopefully he doesn’t get too spoiled with all that room. It’s pretty funny, and since the “parent bed” only fits Ryan comfortably, I sleep in the huge zipper bed with Emmett!
Emmett had blood work drawn when we first got here and that tired him out quite a bit. It was about 10am at this point and he still hadn’t eaten and still had another 1.5 hours to go before he was able to have lunch so he had himself a little snooze.
When he woke up he ate all of his lunch so that was great! Poor bub was so hungry. Here’s what his first ketogenic meal was:
And this was his dinner today:
And his snack for tonight:
Pretty impressive, eh? He has the whipping cream mixture 4 times a day! And also a pat of butter 3-4 times a day. He’s been feeling really lethargic, which is apparently normal when the diet is first started. The dietician said it could last for a few weeks but I’m hoping it won’t last that long. It’s hard seeing my bub so out of it. If I had to eat what he’s eating I wouldn’t feel like doing anything either. But once his body is used to eating all the fat and processing the fat for energy instead of carbs,, we should see a nice improvement. His blood/sugar levels are usually pretty low in the morning, so that’s partly why he’s so lethargic and sleepy. Hopefully that gets better so we won’t have to worry about that at home. They poke his finger every six hours to check… one of those times being at 2am. Emmett is so hardcore though, he sleeps right through those finger pokes! But wakes up about an hour after… another D’oh.
Now comes the good part! Emmett was in ketosis as of Monday night! When his urine was first tested Monday morning, he was already halfway there. They said he was one of those early ketosis kids, so that’s great. His ketones are where they need to be right now. He started at the 1:1 ratio on Monday, 2:1 on Tuesday and since he’s already in ketosis and his levels are where they should be, he’s still at 2:1. Since Emmett’s blood sugar levels have been sort of on the low side in the morning, the neurologist didn’t want to go up to a 3:1 ratio and take away more sugar from him. I’m hoping he can stay at the 2:1 ratio for a while so he can have more carb and protein at the start of the diet. We currently have to check his ketones twice a day for two weeks. After that we just have to check twice a week but can check more if we suspect that they are low or just want to be safe. Knowing me, I will be obsessively checking his keytones daily.
So far it’s gone pretty smoothly because we haven’t had to prepare anything. We have an info session on measuring and weighing his meals tomorrow. It has been a little frustrating, though. The dining area keeps bringing his meals up late. His meals are like meds that are given in doses at specific times, so we need to be on time for everything. I keep having to call and ask where his food is. And send food back down because it’s uncooked or not blended. The dieticians gave them specific rules on what time the food needed to be delivered and how to prepare the foods and they’re still messing up. Right now he gets meds and breakfast at 7:30am, lunch at 11:30am, dinner at 3:30pm and a snack and meds at 7:30pm. He needs to eat every four hours, and even if the staff has been told to bring his meals up 15 minutes early, they still go 15 minutes past his meal time. So extremely frustrating. Especially if I have to send food down to be prepared again, then he eats a half hour later than he should. I’m anxious to get back home so we won’t have to wait on anyone. This mama is always on time!
I think that’s about it for now. As for his seizures, it’s still a bit too early to come to any conclusions so once he’s been on the diet for a little while longer we should hopefully see some improvements. If all goes well tonight and tomorrow, we should be able to go home tomorrow afternoon.
Also, I nursed Emmett for the last time on Sunday night. It made me sad but I’m doing ok now.