Ahhh, we are finally home!
After almost one week in the hospital, home feels like a dream!
Emily came home with her NG-tube and a feeding pump. She is to get 27 oz of a higher calorie formula. We are to let her eat as much as she wants during the day and then as night we figure out how much she needs to total that amount and set it over 10 hours. I never thought an IV pole would be a piece of furniture in my bedroom.
So far so good.
The doctors are going to give her about a month to improve her eating. The NG-tube is really only good for appx 30 days so at that point she will need a g-tube.(goes into her belly)
I am not scared of the g-tube itself, I am just afraid of the surgery. With a very unpredictable disorder things like anaesthesia scare me.
We have also increased her vigabitrin(sabril) to her max dose of 450mg twice a day. I am not sure its made a huge change with her spasms but it def stopped her big (and very scary) seizures.
Also, we have seen little things in her personality shine through. I can hear a difference in her cry or babble. Like if she gets mad at you she will let you know with a very distinctive grunt. Its very funny.
Emily did not sleep
well at all last night. I stayed up until after 4am and then Joe took over. She would only sleep for 30 minutes at a time. She was not fussy just very awake and of course she has slept most of the day.
She is asleep right now so I am going to try and finish so I can sleep. We have an early PT sched in the morning.
Quick funny story- Early this morning in the hospital I was holding her and she has fell asleep. I saw her smile so I just stared at her and she started laughing! Not a giggle, it was a belly laugh! She must have had a very funny dream. I am sure it was about her daddy, he can always make her laugh.