I feel I should write something profound and memorable during my time in the hospital with Little Man. Something that has substance and meaning, but, really I’ve got nothing. Not a single iota of inspiration or creativity to put here on this (virtual) paper. So for today, as chief record keeper it’s just the facts, nothin’ more.
Little Man arrived, for his 3+ day ketogenic diet intake with what seemed like half of our house packed and in tow. Once checked in we got to sit around for a what seemed like hours, at least to this mom who was attempting to control 3 curious kids. In reality it was, oh wait, it was hours! That is right, the monitoring suite we needed was being cleaned, so we waited hours, poor Little Man was starved, and I could give him nothing, while sisters and I all had a snack(to be fair we were discreet about it). Finally, finally we were brought up to his floor, still no room, but hey, now his Ketoteam leader had his first Keto concoction, a shake primarily consisting of heavy cream and whipped raw egg product, and a smidge of chocolate syrup, so he got to eat, yummy!!!
Finally our room was ready, fully up and running and ready to capture every sneeze and sniffle, nose scratch and molar popping yawn we all had. everything in this room is recorded, and I mean everything. I have never been so quiet while peeing in my life, seriously people, there are nurses watching me sleep, literally!!!
Once settled the doctor waltz began, with multiple players coming in and out, imparting news, asking the same questions ad naseum, with residents in tow. So hypotheticals are posed about our case, the premise behind it, how he presents, etc, all afternoon long, uuuuhhhhhh, tiring.
Since many of you do not know I will do a quick recap of ketogenic diet stuff, so you can see what we are up to. Basically we plan to replace nearly all of the carbs in LM’s diet with fats, so his body, in another day or two, will ramp up to fully utilizing fat as food, and the use of these fats leaves waste in his body, ketones. These, in some way or other yet unexplained and understood, in many cases suppress the bodies desire to create a seizure episode. So, for instance, today at lunch he ate 4oz heavy cream, 50 grams watermelon, 15 grams sausage patty, 42 grams egg, scrambled. Not bad right, tomorrow the egg and sausage will increase, mmmmmmm. Did you notice one important factor, everything is measured, and remeasured before he can eat it. That is key in the Keto diet, and my next big obstacle.
Last night shall remain a blurry memory of unending nurses coming in, blood pressure cuffs before dawn, detangling of the yards of wires he wrapped himself in, I am exhausted just thinking about it again, vamoose memories, banished forver.
Today, again the waltz of doctors, different residents this time, even more odd questions, purely technical tests, strange requests for repeated actions, all leaving LM irritated at the world, and wanting them to go away, sorry dude, that is a no go:-(
The Ketoteam leader from Nutrition spent a few hours with us is a.m., and will be back in an hour or so to start cramming food grams, fat quantities, carb max amounts, etc into my head. Coffee may be needed to assist in the retention of this information.
Thankfully Little Man is a rock star, he just hangs out, plays computer games, watches Kung Fu Panda 2 for the 3rd time, does his school work, and answers the same darn questions, for the same darn doctor yet again(I had to tell LM that the doctor is like Nana, he forgets things all the time, as to why he asks the same questions over and over each day:-).
I am amazed by his patience and grace,and his willingness to just work with everyone, he is such a blessing, and a great reminder to me of the niggly little flaws I struggle with every day. God really knew what he was doing when He set our feet on this path.
So, that is today, just the facts, as they stand for now.
Thanks to all who have prayed for us and continue to pray, we appreciate every kind word and thought!