Owen's metabolic study yesterday morning revealed that he is running at 170% of what his age/weight calculations predicated - so almost double what would be typical for a kiddo his size and age. It was a perfect study - he was sleepy and laid under the ventilated hood, still the entire time while they took measurements of oxygen consumption and carbon dioxide production. The numbers are quite accurate and give us a really good idea what his RMR (resting metabolic rate) is. This number is important in the keotgenic diet since we want him to gain weight on the diet while also remaining in a state of ketosis. This number surprised even O's dietician and is obviously why we've not been able to get him to gain much weight the last three months with the formula and volumes we were using from our nutrition consults at Children's.
After a day of fasting and two days of well below normal caloric intake (as we titrate the ketocal up to the levels he needs) he is back down to fifteen pounds. I appreciated the fact that Lisa, his dietician, referred to him as a "little peanut." I like that. His genes, his high tone and propensity for movement play into this RMR number. Kelsey and I both have high metabolisms - Kelsey's is evidenced by his need for two breakfasts, a mid-morning snack, a big lunch and even bigger dinner and mine was confirmed during my pregnancy with Owen when I had to measure my glucose for two weeks. I burn through calories fast. We were happy to hear that Owen's movement - he is all of the time squirming around, waving his hands, moving his feet - is a good thing. It will help to keep his muscles strong, help his respiratory system and help overall to keep things moving through his system. We were told today that Owen is definitely not one of those children who "just lays there." That's our little guy!
We get to leave the hospital tomorrow. Ahhhhhhh. Owen is such a champ and is tolerating the new formula perfectly. Since the ketocal is so high in fat, oftentimes, especially with kids like Owen who had severe GERD (reflux) in the past, things move much more slowly through the body, are less able to be absorbed and end up "backing up." Imagine how you'd feel if you ate bacon, cheese, heavy whipping cream, eggs and butter for your meals each day. Truly, if Owen was not tube-fed, this would be our biggest challenge - getting him to eat the amounts of fats he needs to keep him in a state of ketosis. Lisa said that this is the primary reason why the diet fails in older kids - they just refuse to eat these foods in these quantities. We have heard repeatedly the last two days that, given his seizure activity, it is a blessing that Owen has the tube as it allows us to easily administer the ketocal - a perfect formulation to keep him in a state of ketosis while providing him with the nutrients and calories that he needs for continued health and growth. I never expected to hear the tube referenced in that way, but we'll run with it.
Dr. Olson has requested that, in exchange for him discharging Owen tomorrow morning, shortly after O starts the full strength ketocal, we stay in Palo Alto so that should he not tolerate this, we are close by. We happily agreed as overnights in the hospital are so rough. Nurses come in and out of the room regularly throughout the night, checking on their patients. Monitors go off. The air is recirculated and recirculated and recirculated. We will be staying at our hotel Wednesday night, perhaps celebrating with a dinner out in Palo Alto (so many great restaurants here!) and will leave for home early on Thursday morning, arriving in Indianola (oh, Indianola!) late on Friday.
O's seizures continue to decrease in frequency. I was just talking to his nurse, giving her an update on his last attempt to fall asleep for a nap. Typically it would have taken him 45 minutes to two hours to fall asleep and he would have had anywhere from 20-40 seizures. He just now fell asleep within 15 minutes and had three seizures. Cautious optimisim...