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Our family

Wednesday, December 26, 2012

Christmas, ketogenic Diet...

We had a nice quiet Christmas at home.  We normally go to my mom's house on Christmas day but she is visiting my sister Mary and her family in VA.  We didn't do anything and ate when we felt like it, didn't even really cook.  It has been a long time since we did that.  Becky brought the kids over to get their gifts and stayed just a little while.  We did the big Christmas Eve dinner with Chuck's family here so we wouldn't have to take Hannah out and get her back in time to do her meds etc.  Our grandbabies had  a lot of fun opening presents.  Thanks to the hospital and RMH while we were there I got a lot of their gifts there.
  Hannah has a UTI so we had to start her on bactrim.  She had ecoli in her urine and it was only sensitive to bactrim.  But, it is low on the ketogenic list so her ketones have dropped a lot.  She finishes it on friday so I hope the ketones go back up then.  She had 5 seizures in a 12 hour period for the nurse on Saturday night.
  I did talk to the NP from neuro Monday and she said that they saw 12 seizures on the 48 hour eeg and from her description, they are her usual seizures.  I didn't see her have that many so some of them must have been subtle.  Thankfully she isn't having as many seizures as I thought, but that is more of those than I realized.
  Hannah has also been constipated really bad and finally had some bm yesterday.  But we can still feel some in her belly, so please pray she can get rid of that herself without being impacted.
Hannah at church Sunday, tried to get a pic of the lace on her shirt but she kept putting  her hands in the way

Hannah with her tie dye peace pillow pet and giraffe she got for Christmas (things I picked out at the hospital.
  Other than those things she has been her usual complicated self...she writes her own rules and doesn't like to follow anyone else's rules  :)

Monday, December 17, 2012

Dial Holiday Foaming Hand Wash

Dial provided  a free sample of their Holiday Foaming Hand Soap for this post.  My participation is voluntary and my opinions, as always are my own.
 What fun decorations on the bottles.  I got one with a snowman on it and looks really looks cute in my bathroom with the snowmen decorations I have.  The other one is candy cane, I have that one in my kitchen.  Both really look nice and bright for the holidays.  I love the foaming hand soap it saves me a lot of money.  the soap inside is red so it is very festive.  I haven't found  a refill in that color for it yet.  I will leave these out all winter since they aren't just Christmas patterns.  I love using cute soap bottles too and these are not expensive at all.  The formula kills 99.99% of germs  which is very important to me.  I have a daughter who is medically very complex and is very susceptable to germs.
  You can find info about the hand soaps on the  Dial website.  Or you can find them on   Dial, Healthier Skin, Healthier You!
My kit still in the box

A close up of the bottles

The snowman in my bathroom

The candy cane in the kitchen

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".

Tuesday, December 4, 2012

Day 8 of the Ketogenic Diet

Hannah had her port placement this morning.  They called really fast to take her so I didn't have warning...later the surgeon said he moved his schedule around so he could get it done quicker.   She did much better than he thought she would.  i found out this morning because of her bleeding disorder (von willebrands)  she had to have the factor of it before surgery and 3 days we will be her til friday.  but that is kind of a mute point right now, she is not in metabolic acidosis, it is metabolic alkalosis.  So they have are reducing her sodium and stopping her sodium bicarb.  They need to watch that now, in the past without the sodium bicarb she has gone into metabolic acidosis :)
  Her blood pressure has been up since surgery so she seems like she is in some pain.  they gave her some  morphine to see if that would help.  She has been asleep since I got back from dinner. Normally when she has surgery she is already on pain meds, but this was quicker than the rest.
  Thanks for your continued prayers

Monday, December 3, 2012

Day 7 of the ketogenic diet

Hannah's ketones are 160 now!  80-160 is where they want her to be.  Her blood gases today were a little abnormal so she is in metabolic acidosis.  They just need to watch her to see if they need to increase her sodium bicarb.    She has done this before and is one of the things I was worried would happen during the diet.  We won't go home til they get that under control.
  She is probably having surgery tomorrow morning to have a port put in for blood draws.    They were checking her clotting factors today since she has von wilebrands  a bleeding disorder too.  The nurse is going to check for me to make sure.  I will post more tomorrow.

Sunday, December 2, 2012

Days 5 & 6 of the ketogenic diet

Things are about the same, ketones are staying around 80.  That is the low end of where she should be.  Her heart rate is still a little higher when sleeping but neuro said that could be because she is in a fasting state almost dehydrated, so that could be a new normal for her.  It's running right around 100 and usually it's 70's to 80's when sleeping.
  Her eyes are much better with the ointment they are using.  If we go home on them I am asking for drops, the ointment is so messy.
  They said surgery should be coming by to talk to me about a port.  If they can schedule it I would rather stay one more day than have to come back.  We live so far away this will give us extra assurance if her levels are off too much and we need to check her blood.
  Her sodium level was low so they gave her extra and now it's a little higher than usual so they are going to reduce it a little.  They have already cut back on her seizure med, trileptal.  We had talked to neuro and nephrology about getting her off of it since it can cause low sodium levels.
  I think she is doing pretty good considering all that is going on.