Sylvie woke up at 6 am starving and proceeded to devour some more cream cheese and then half a chocolate peanut butter shake. I followed a recipe that Karen from The Whole Child gave me and boiled & mashed enough kale to get a few teaspoons of green stuff to add to the concoction. Plus some yogurt, vanilla ice cream and Ultimate Meal powder. Simple math measured it to be over 700 calories. A Big Mac of sorts.
I gave Sylvie her Fortaz/Heparin around 8 am and finally I think she understands that it does not hurt. That being said, there was NO WAY we could get her to orally take her Bactrim or Magnesium.
We arrived at the Reuten outpatient clinic around 11:30 and Sylvie decided to put on a show for Michael and be pretty much insane. Yoomi played her fancy rosewood Martin guitar for Sylvie while she watched another Barbie movie. Suzanne drew blood from Sylvie's port and for the first time, Sylvie helped flush the IV line by pushing on the end of the syringe. I don't know if that's good or bad. At least she wasn't crying.
Dr. Appel, Dr. Halpern and Annette all examined Sylvie and she was pretty tolerent of them. Dr. Steele came by to say hello which drove Sylvie bonkers. I love that she dresses a little like Laurie Bernker-- lots of bright colors-- but I think Sylvie has hospital flashbacks. I lied and told Dr. Steele that the only person Sylvie is nice to is Dr. Halpern. She knew I was lying but also that I was trying to make her feel better.
Linda, the nutritionist came in and we reviewed Sylvie's food and the shakes. Whereas as adults, we try and cram in a ton of protein and low carbs. In Sylvie's case, a healthy 3 year old weighing 22.3 pounds would only need 11g of protein a day. They upped Sylvie's to 20g. That being said, protein powder + milk + peanut butter + whatever equals a lot of protein. Hence we have to use less protein additives and more carbohydrates. Linda gave me a box of DUOCAL calorie additive that's like cholesterol in a packet (palm oil, coconut oil, etc.) to add to the shakes. We have never ever used a whole jar of peanut butter so quickly!
We had been waiting for Sylvie's lab results and Annette and Suzanne rushed in, very excited. Not only are we allowed to discontinue the Fortaz, but Sylvie also doesn't need Neupogen shots. AND we don't have to come in for labs on Monday unless Sylvie is acting funky. What this means is:
a). No torturing Sylvie
b). No extraneous visits to the hospital
c). Michael and can actually get some sleep
I joke that Sylvie's Fortaz 'balls' and all the accoutrements cost $280/day for a 10 day supply ($2800) but since we only needed it Wednesday evening through Friday morning, essentially it cost $1000/day which insurance is PAYING but they still WON'T pay the $95/week for the Complete NG tube food!
Michael got to really experience a full day of Sylvie bossing us around. I have to admit at 6 pm we asked Sibel to watch her for an hour so we could go to the gym. I just needed an hour of not talking to anyone or being ordered around by my toddler. Michael was just fried!
We began utilizing the sticker chart that Siobhan made for Sylvie in the hospital as a way to encourage Sylvie to eat, walk and brush her teeth. Brushing her teeth involves Michael prying open her mouth and trying not to get bit.
Sylvie has gone to bed the past 3 nights at 7:30 which I guess is normal toddler time as opposed to working parents toddler bed time which is usually much later for us. However, she wakes up constantly hungry because she's used to getting nearly 450 calories via the NG tube while she sleeps. Under ordinary circumstances I would never condone this but for now, we keep a bowl of cottage cheese and a shake in her bedroom for her cravings.
But these are no ordinary times in our household!
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