These last few days have been a roller coaster, Danielle has finally finished 4 of her 6 grad school summer class so here is the promised update from the last couple of days!
Stephen started the ketogenic diet on Monday and has done great with the diet since then. We have been told by multiple doctors that we were being seen by at Duke that he was the best child they had seen adapt to the diet; he tolerated everything wonderfully. We have had such a great outpouring of support and love that we appreciate so very much. We have also had many questions about what exactly goes into preparing a meal for Stephen so here is a little synopses from the hospital. (which we have since learned was MUCH easier than at home!!)
His meals consist of a meat and a vegetable or fruit along with a host of fats that we add to the meal.
We have our scale and measuring supplies out and ready calculate the percentages of each component of the meal he gets
We were given a list of about 15 recipes for Stephen to choose from and the exact gram amount that everything must be in (We have to be exact down to the 100th of a gram for the diet to be successful)
Then we start the weighing process, we have to weight out each container, then set the weight to zero and then add the exact gram amounts of the foods.
It can be quite tedious and time comsuming even when you have everything out and ready (We have since learned from coming home that this was nothing at the hospital, it is way more time consuming at home)
We then line everything up and try to figure out how we are going to mix everything for him to eat. The key is that he has to eat EVERY drop of food that we have measured out, no piece can fall or be left behind or else his carbohydrate/fat/protein ratio will be off.
On top of all of that we still have to get all his seizure meds and now a slue of multivitamins and minerals also in him
He usually tops a meal off with a syringe full of cream. Another key element of the diet is that he must eat everything within a 30 minute time period or else his body will start metabolizing the foods at different rates.
Stephen has been such a tropper through this whole experience, just as happy as he can be! :)
This was the precautionary IV that they put in just in case his blood sugar levels got too low when we started the diet (a common symptom for many kids)
His g-tube looks fantastic and has been healing wonderfully. He loves watching water go down his tube and playing with it.
Stephen had some special visitors while we were at Duke who showered him with gifts, love and prayers. Mom and the rest of the family have also been showered with love, support, and gifts at home that we are so grateful for.
We had the most wonderful teams of doctors who watched after Stephen during our stay, he was monitored by neurology, GI specialist, general peds teams and his dietitian. They were all so great with Stephen and getting his diet started, we couldn't have asked for better teams!
And we were able to head home a day early from the hospital because Stephen was doing so great on the diet!! :)
Like I said, Stephen did great while we were at the hospital and we are so thankful that he tolerated the start of the diet well. Coming home has been quite a reality check, taking care of Stephen, managing his meals, medications, water intake and blood test has turned into a full time job for both Julie and Danielle. Just to give you a glimpse of what we have to do, Stephen has to be given 240cc of filter water every 2 hours through his g-tube, we have to test for ketones in his urine multiple times a day, we have to test his blood for glucose levels and ketones once a day, along with changing his entire diet and measuring out all his foods precisely- it is overwhelming to say the least!
Unfortunately today Stephen hasn't been doing as wonderfully as he has been. Stephen hasn't been able to keep down foods or liquids for most of the day. We are concerned about possible diet complications (him being in severe ketosis) which we think we have ruled out, complications with his g-tube, shunt failures or hopefully just a virus. We have been in constant contact with all of his doctors and specialist at Duke and we will continue to monitor him overnight. Pray that he will start taking fluids again and that this won't be a complication that ends us up back in the hospital.
Please continue to pray for patience and guidance and that we get adjusted to our 'new' normal on this diet
Pray that Stephen will continue to be healthy and thrive on this diet
Pray that today was just a sick day for Stephen and he will be back to his sweet self tomorrow.
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