My loves

My  loves
Our family

Friday, November 30, 2012

Day 4 of the ketogenic diet

So, this morning still not many ketones but this afternoon her level had finally gone up to 40!!  The nutritionist said she was ready to celebrate!  they are giving all her formula in 4 feedings and just giving her water overnight and it seems to keep her in a better fasting mode.  So now we watch her this weekend and may not go home until monday but at least not til Sunday.
  She might have a bug of some sort.  Over the weekend she had a lot of secretions and drainage from her eyes.  we assumed it was allergies, no fever or anything but when we got here on Tuesday, it was better. Allergy said it shouldn't be her allergies right now but they did put her on claritin.  Now she has some nasty looking secretions from her trach and green drainage from her eyes (they started eye drops yesterday) and now some diarhea but that could just be from her meds.  So we are just waiting to see how she does.
  we really want her to get a port for access for bloodwork but they wanted to make sure her sodium levels were ok.  I told them I would rather stay an extra day to get that done than have to come back again and get her exposed to more germs.  At least here she is on contact precautions for her MRSA.

Thursday, November 29, 2012

Day 3 of the Ketogenic Diet...much better!

This morning after 48 hours and almost 24 of fasting, Hannah finally has ketones and her glucose level is going down.  they both have a ways to go but they are trending in the right directions!  No teaching today so it has been a pretty quiet day...except for blood sticks and her blood keeps coming :(  lots of mess..Hannah is a hard stick and her tiny little veins roll but she also has a bleeding disorder so   once it starts, it's hard to stop...can't win.
 At least she is finally headed in the right we have to pray that insurance covers all the meds and things that she needs...glucometer, vitamins, etc.

Wednesday, November 28, 2012

Day 2 of the ketogenic diet...frustrating!  Hannah should at least be in a a little bit of ketosis by now, but she is not!  So now she is fasting for 24 hours to help that.  So instead of going home on friday it will be at least Sunday.
  She  is doing ok other than that.  Talked to her medically complex dr today and he wants to go ahead and    get a port for blood was really bad yesterday and today they squeezed blood out of her finger after a blood sugar check.
  As usual, she likes to be difficult!  LOL
   the  supervisor from the nursing agency was here today for teaching of the ketogenic diet and how to use a glucometer to check her sugar levels.  A lot to learn.

Tuesday, November 27, 2012

Day 1 of the ketogenic diet...very stressful.  They told me to be here at 9:30 or 10:00 to be admitted and if a room wasn't ready, they would send us to day medicine.  When I went to admitting they said I was an hour early and didn't   need to be here til 11:00.  So we went to day   med.  They called and said they had a the elevator stopped at the 2nd floor and when i went to get off the day nurse med said we are going to 3C.  I told her we can only go to 2A since Hannah has a trach so when we got there, they called 2A and they weren't expecting we came to the floor and had to wait for them to move 3 kids around to make room  for us (she is MRSA positive) Finally we got a room, they laughed and said we got upgraded! We are in a private corner room, the only room with it's own bathroom.  We were in this room 2 years ago and were  here for a month.  She had spinal fusion 2 years ago yesterday and while in surgery, she went into kidney failure and had to have dialysis!
  She  just got her first feeding of ketocal...a ratio of 3 to 1. they will watch her ketones and will slowly increase the feeding til it's full strength.  She has to be at her regular feeding schedule and have normal labs to go home.
  The IV team came in and almost gave up on giving her an IV,  they were shocked at how much her veins rolled and how she could wiggle her arms and make them roll more.  so we are protecting that IV.  I think I need to approach having a port put in again.  the ketogenic diet is going to have us doing more labs  than usual.
  They were full at the ronald mcd house and didn't have  a room for me but the social worker called today and they had some check outs so they finally had a room for me, thankfully.
  I will update more as things change.