Otis has been settling in very well since being admitted to Children's Mercy yesterday afternoon. He was very brave through blood draws at the outpatient lab and then again in his hospital room--they had to do a lot of lab work to get baseline levels before getting him started on the ketogenic diet. He had his first helping of KetoCal formula yesterday, mixed in with his regular Similac formula. They're starting him off on 1/3 KetoCal to 2/3 Similac. He has had 4 Keto/Similac bottles since we've been here, and has tolerated them really well. We noticed that once he's finished the bottle, there are shortening-like blobs left behind in the bottle nipples....yum.
The nurses come in three times per day to do heel sticks to check O's blood glucose. He actually tolerates the heel sticks really well since he had to have them done twice per week for the entire 6 weeks that he was on ACTH. He doesn't even bat an eye anymore. We have also been putting cotton balls in his diapers so that the nurses can check his urine for ketone levels, which should be slowly building by this point. We think they'll probably increase his KetoCal to Similac ratio a little more today. Both the dietician and Dr. LePichon have warned us that as Otis moves into ketosis, he will become pretty sick to his stomach, as the buildup of ketones will make his blood acidotic....meaning that his blood pH will increase above the normal level of 7.4, becoming much more acidic. They have hooked up a little IV port to his arm so that they can give him bicarbonate to bring the acidity back down until his body adjusts and is able to compensate on its own. We're told that kids usually become sick on the 2nd or 3rd day on the diet. We're really not looking forward to that, but Dr. LP said that the sooner it happens, the better. He told us that there is a very small chance that we'll get to go home Thursday morning, but it's more likely that we'll be here until Saturday or Sunday.
Besides being super sleepy these past few days, Otis is doing very well and seems to be tolerating the KetoCal just fine at the current dosage. Dr. LePichon said that the sleepiness is probably due to the extremely high dosage of Vigabatrin that he is still on. Once he is stable on the KetoCal, we hope to be able to wean him off of the Vigabatrin as soon as possible.
Before his admission yesterday, we took Otis to Children's Mercy South in Overland Park for an EKG and echocardiogram and a visit with a wonderful cardiologist named Dr. Simon. About a month ago during a follow-up visit, Dr. LePichon was listening to Otis's heart and detected a murmur. He got Otis set up for an EKG and echocardiogram, which took place a couple of weeks later. Unfortunately, the tests came back abnormal. Dr. LePichon told us that the echo showed that Otis had ventricular hypertrophy, or thickening of his heart's ventricular walls. He said that it was probably a result of the ACTH, which Otis was completely off of by that point.
When we saw Dr. Simon yesterday, she drew us a great picture of what had been happening with Otis's heart. She showed us that both ventricular walls had become thick enough to block some blood flow in and out of his heart, which was very alarming. Fortunately, yesterday's echo showed that the thickening had decreased by about 80% over the past 3 weeks, and it will probably return to normal over the next few weeks. There is currently no blockage to blood flow in or out of his heart. We will take Otis back to Dr. Simon for another echo and checkup in about 2 months. We left that appointment with spirits lifted from the great news.
Today will be a big education day for us. Lindsey the dietician will spend some time going into greater detail about the diet and showing us how to mix up and measure the KetoCal. It sounds like it's going to be much more involved than just dumping some powder into a bottle of water and shaking it up several times per day. So far, the bottles have been pre-mixed for us before being delivered to Otis's room by the nurses.
While we wait for Lindsey, we've just been spending the morning playing with Otis, rolling in his crib, having tummy time, sitting up in the bumbo chair, bouncing and dancing. Daddy is actually dancing around the room with him right now, singing a new Ketogenic Diet song to the tune of the Paula Abdul song "Straight Up". Otis thinks it's pretty hilarious!
This diet is definitely weird, but we're feeling very positive about its potential for healing Otis. The ketogenic team here is just awesome, and they continue to make us feel so incredibly encouraged and supported through all of this. We'll continue to post updates during dance party breaks so everyone can stay informed on how Otis is doing.
If you feel like doing some reading up on the keto diet, here is a great book, put out by the keto team (Kossoff, Freeman, Turner, & Rubenstein) at Johns Hopkins:
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