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Sunday, December 9, 2012

Days 9 - now of the ketogenic diet :)

Things have been really hectic since day 8 and the port surgery...first off we are HOME!  Got home about 4pm on friday.
  After Hannah's surgery, her ketones dropped from a high of 160 (good) to a low of almost nothing!  The only conncetion we can find is since she has von willebrand disease, she has to have von willebrand factor through the IV for 4 days to allow her blood to clot.  There must be something in the factor, it says it is a glycoprotein.  The nutritionist said it must have some fat in it or something.  After the last dose on thursday night, her ketones are slowly going back up.  I think they are about 60 right now. 
  She has kept them guessing since we were admitted.  The nutritionist, Nicole, said she knew Hannah would be different than most kids on the diet but she didn't realize how much different  LOL  they had put us on the red team, they deal with neuro.  We are upset that they didn't put us on our gold team (medically complex)  since neuro didn't do anythng for us.  and they had to keep consulting others about what to do...the gold team would know what to do.  I did run into dr M in the cafeteria and told him, he asked if there was anything he could do then but we were going home the next day so I told him we were good right then.
  When she was in metabolic alkalosis, they took her off her sodium bicarb but when we left they put her back on it.
  It has been busy getting all her prescriptions changed over to ketogenic friendly ones.  Every change, medical assistance fights and says it needs to be pre authorized...coming home late friday to find out that 3 of the need pre auth and 1 is no longer avaiable!  Now, I get to make a lot of phone calls tomorrow.  Also  one of nurses took Hannah's folic acid from me and they didn't give it back to me, so they are going to mail it to me.
  She is on 4 feedings a day and overnight only water, that helps keep her in ketosis but the overnight water is running out at 3 am so I need to get that fixed.  Before she was on 3 feedings and overnight.  Making up her formula every morning is so much fun...not!  I have to use a gram scale and it has to be calculated with everything we use...she gets keto cal liquid 327 grams, beneprotein 5 grams and 148 grams of water.  That all has to be shaken really well, it tends to clump.  Each feeding gets 120 ml of formula mixture and 120 ml of water.  The water is important in this diet, they can get kidney stones and we don't want that!
  It felt so good to get in our own beds and the shower felt even better   :)    Today we got to go to church, we missed it the last two Sundays.  Things are slowly getting back to "normal".

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