The start of something magical

January 9, 2017 – Start Keto Diet

In the days leading up to our hospital admission, I thought, for some overprotective, parenting-inclusive reason, that it would be a good idea to explain to Reagan that we were going to have an overnight with the doctor, and that we were going to start eating “magical” food while we were there. We talked about what she would pack for her overnight at the doctor’s, the toys, the blankets, and the pillows that she would want. I wanted to make it fun and exciting and was hoping that this approach would actually help with the reality of the upcoming multi-night hospital stay.

Apparently, this was the wrong approach…

For Blake and me, the morning went pretty smoothly. I had spent the night before carefully going over lists, which had been in the works for weeks, to ensure that we had everything we could possibly need for the multi-night stay less than 20 minutes from our house.  If the world came to an end, we were ready.

We woke Reagan up and had our normal family routine in which she watches her shows in our bed while we frantically shower, make breakfast, feed Otto, and iron our clothes, all with “we have a really big problem” playing in the background, constantly reminding us of our combined extraordinary procrastination skills (thank you, RMPBS). Even with the consistency we tried to keep that morning, we, along with Peg+Cat, still had a really big problem.  Reagan knew something was not right, that something was quit wrong.  My pre-talk had backfired and she was ready to throw down her two-year old guns at any moment in order to stay home.  This resulted in the most epic tantrum we have seen to date.  It was a wonder to behold.

After fifteen minutes of pure, end of the world toddler fueled tantrum, complete with endless army crawling, fountains of tears, and the highest and loudest pitched screams imaginable, we had wrestled her into the car and were off.  Needless to say, she was not the “excited for a sleepover at the doctor’s” toddler that we were hoping for that morning.

To start the diet, Reagan was not allowed to eat for twelve hours prior to checking in. Once checked in, she was supposed to get half of her daily calories from a shake supplement called KetoCal on that first day. The remaining days, she would get all of her calories from keto meals precisely prepared by Mom and Dad.

KetoCal is disgusting. Imagine a thick, vanilla protein shake beefed up with extra fat. We tried putting it in her bottle and convincing her that it was milk. She caught on quickly and immediately stopped trusting anything that we gave to her in any of her bottles. This lasted throughout the entire stay and continued once we got home.  Being the opportunistic parents that we are, we used her new distrust of bottles, and us, as a way to wean her from them completely.

That first day, she only drank about 3 ounces of the 12 ounces of KetoCal, and with it, only about 13 ounces of water, when she needed at least 20.  Because of her lack of enthusiasm over the KetoCal, the nurse and doctor decided she needed an overnight IV, but at half the drip, with the hopes that she would stay hydrated, but still be thirsty enough in the morning to possibly drink some water, or anything really.  Her IV was already in place from when we first arrived earlier that day.  The Technician that put in her IV was so amazing, and so skilled, that Reagan didn’t even notice when the needle went in.  We have to find her again if we ever need another IV.  Reagan by nature can be a very restless sleeper, tossing and turning all night, trying with all of her might to find that one, perfect position.  With an IV line attached, this method of “sleeping” did not work well for her.  The line became tangled around Reagan many times, which in turn, reminded her that she did indeed still have an IV, to which she would start crying and try to pull off the bandage.  On top of that, when the line became pinched, the machine would start a loud frantic beeping alarm to alert what must have been the entire hospital that she was not receiving fluids. This alert worked especially well on a toddler who had finally found that one, perfect position.

By Tuesday, she was right on course. She had starved her body, had (minimal) KetoCal, and had some forced fluids. They drew some blood samples that morning (very luckily through the IV with no additional pokes needed) and grabbed a urine sample.  And how does one do a urine sample on a toddler still in diapers?  Cotton balls. Enough said.

Her labs came back and it looked like her body was responding almost too well to the new diet, complete with elevated ketone levels and low bicarb levels.  Having higher than average ketone levels increases the chance that you get acidosis (or heartburn of the blood, which I call it).  The decreased bicarb levels also put her at risk for  this.  To counter acidosis, they gave her an IV of sodium bicarbonate (or Tums for the blood) to bring her acidity levels down.  She ended up having to get two of those on Tuesday, since the first one barely moved her bicarb levels.

As for the food, Blake and I got the opportunity to make her Tuesday meals on Monday.  We had a session with one of the Dietitians where they went over the intricacies of creating a 3:1 keto meal.  Everything had to be precisely measured.  All meals had to be perfectly calculated to fit the required ratio of fat to protein/carbs.  Pretty straight forward, measure the food, feed the kid.  We got this.

You would think that after not eating for 36 hours, minus the few forced sips of KetoCal, she would be starving.  I’m convinced she was, but at that point, all trust was lost between us.  Her first meal, scrambled eggs drenched in butter with a side of apple, was met with much reluctance and pure distrust.  At first, she refused to take a bite of the eggs.  We had to play the “if you do that, then you can do this” game for a solid 20 minutes.  Once that first bite finally made its way into her mouth, nothing could stop her.  She plowed through the eggs and butter and even asked for more.

At lunch time, we presented her with a lovely Mom & Dad prepared meal of pepperoni drenched in butter and mixed with cheese (which actually didn’t look too bad).  20 minutes of negotiating later, she had taken a bite, and again, loved it, destroyed it, and wanted more.

Reagan was very consistent during our entire stay with her 20 minutes of intense negotiations before trying a single bite, realizing it was tasty, that she was hungry, and then eating all of her food and wanting more.  We only had a couple meals that were a complete failure and that she would not eat.  The worst one, which was my own invention, was chopped up chicken with melted butter and heavy cream.  It definitely sounded better in my head than it looked and tasted in real life.

By Wednesday, her bicarb levels were still not up, and her ketone levels were still very elevated.  The Dietitians made the decision to switch her from a 3:1 ratio to a 2:1 ratio.  They also ordered her a couple more IV’s of sodium bicarbonate to try to bring up her bicarb levels.  We spent the day negotiating first bites, exploring the hospital, eating lower ratio foods, and pinching IV tubes, all while waiting until Thursday morning when they could run her labs again to see if her levels had finally evened out.

By Thursday morning, we were very anxious to see what the results would be and if we were on the right path with her new 2:1 ratio, which we were desperately hoping that we were.  The labs came back; her ketone levels were down and in the range that they needed to be and her bicarb was significantly up, very close to where it should be.  It was the green light we needed to go home.  Her body had adjusted to the 2:1 ratio diet and was handling it well.  Now it was up to us to keep it going on our own, at home, at daycare, and in the real world.

Reagan exploring the hospital, with her very well placed towel over her IV.

Relaxing and enjoying endless tablet and tv time.

So much love from everyone!  On both doors are cards upon cards that people sent into Reagan.  She loved getting them and then telling us where to hang them after we read them to her.

Time to go home!  And she even has a new dog to walk in lieu of Otto!