What a great day!! Happy to say, everything has gone so well today. Andrew, Luke and I got to St. Louis Children's this morning around 8:30. (Grandma and Caleb stayed back at the hotel). Luke was admitted and we settled quickly into Luke's private room. Yay! We're waaay up on the 12th floor with some awesome nurses, nerdy neurologists (hey, you WANT your neurologist to be nerdy, you know what I mean?), and one spectacular dietician!
Luke's dietician, Bridgette. She's great!!
Turns out Luke DIDN'T have to fast all day. They changed their policy for kids under 2. So, he ended up waiting only until 1 pm at which time we gave him his first Ketogenic meal! We've weaned the Topamax and today we're starting to wean him off Vigabatrin. Adios drugs, hello RCF formula, apple juice and....olive oil. Yea, for real. We had a choice of adding heavy cream or olive oil and the Italian half of me immediately blurted out, "We'll take the olive oil" My husband looked over and grinned and then shook his head at the nurses saying, "She Italian, what can I say?" Now before you feel sorry for Luke having to down what sounds like a nasty concoction, let me tell you. The kid LOVES the stuff. He has successfully guzzled 3 of these bottles now. He likes it, Mikey likes it!!!
Luke sucking air....drank the bottle DRY!
What's the plan now? Well, every four hours Luke has his blood sugar checked. So far, so good there. No drastic dips. Praying it stays that way overnight. Secondly, we're waiting for his "ketone" readings to increase. It's the production of ketones that can sometimes, surprisingly, stop seizures. When the body processes fat, it produces ketones, hence the high fat diet. Believe it or not, that's it! It all looks so simple when I type it out like this. Of course, there are things that could go wrong, but they seem fairly minor at this point....blood sugar drops, which would mean he'd have to get an IV or extra apple juice, acidosis which would require a tweak in the diet, and potentially (though rarely) some vomiting and lethargy as he gets used to this new menu.
Nurse checking yet another blood sugar. Luke is NOT fond of this process.
There seem to be so many different thoughts I could write at this point. But for tonight I'll just mention how much peace we feel. When it came time to decide how to treat these stupid seizures, I had the most peace about this diet option. And while I would still make the same choice, it hasn't always been easy these past two weeks....counting seizures, weaning meds, watching Luke's little body jerk beyond his control, all the while knowing you made the right choice, but just wondering how it was all going to play out. Luke seized 30 times on the way to the hospital this morning. I watched, I counted, I held his hand there in the back seat of our van and then I really couldn't do anything else but just close my eyes. I asked God to please grant us the peace we needed and the assurance of His presence. God really did that for us today. We checked in, rode the elevator up, found our room, walked in and.........peace.
There were three people watching over Luke today. First, his nurse who graciously listened as I told her Luke's history and how we'd come about making this choice for the Ketogenic diet. She said, "you did the right thing"...and not in a nurse kind of way and maybe not even in favor of the Keto diet, but in a mom kind of way of "you followed your heart, kid, and there's a lot to be said for that." peace. Secondly, his dietician spent a lot of time with us today. She's the barista serving up these yummy Keto drinks. :) We were talking to her about the use of the Keto diet in different kinds of epilepsy. She says, "Well, we use it for all kinds, but it's especially effective with infantile spasms." She rattled off about 5 more rare-sounding syndromes and conditions that have shown success with the Keto diet, but then came back to "But infantile spasms in particular have really responded to this diet" peace. Our last visit tonight came from the attending doctor. Never met her before. She comes in, meets Luke and looks at us and says, "So I hear you've been doing some reading. Your doctor tells me you all read the article from Johns Hopkins comparing ACTH therapy and the Keto diet. I applaud you for your interest in your sons care. I mean to sit and read through medical journals..... you guys are serious about educating yourselves on all this" (Thank you!! Thank you Dr. Neuro for acknowledging that us parents might understand a thing or two. And we are capable of plodding through medical journals and making sense of it all.) She goes on to say, "Now if it were me.." And I was thinking, 'Oh, here we go. She's gonna tell us she would have done the steroids, but she respects our decision and we'll just see what happens' But, no!! Her sentence ended with, ...."I would have done the same thing!!" ::sigh:: peace.
Must get to bed. Luke and I are snuggled in for the night...both of us in our Christmas jammies. For now I'm just pondering this....Do I wish Luke would never have another seizure? Yes. Do I wish were weren't staying another night at a hospital? Yes. Do I know what tomorrow will bring? Nope. Am I scared that I don't know what the future holds? Sometimes. Do I feel peace right now despite all of that? For sure!
The hospital looks beautiful!
Caleb and I in front of the BIG tree.
Caleb exploring St. Louis Children's art pieces. He had so much fun!!