Pediatric Intensive care unit
The only good thing about Primary's. The slushies
Getting a breathing treatment
The cute nurse gave Lila a bow. It was more like a hat! I was scared it wouldn't work, I thought she didn't have enough hair for a big clip. Turns out she does. So cute.
Lila went home with home suction. She is not a fan. She sticks her little tongue out so you can't stick it in her mouth.
Lila's new friends. We named them Alfons, Enrico and Scooter
So, here is what we learned. Lila's went into adrenal crisis because of her going off the steroids cold turkey. Natural steroid production is considered pretty low under 7 Lila was at a 1. Her body couldn't fight off a simple cold. All of her virus swabs came back negative, so probably not RSV.
We also found out that Lila has a floppy airway. It has a very serious sounding name but basically thats what it is. They are hopeful that it will resolve itself with time. But that pretty much means that Lila will need some sort of feeding tube for a while. We are hoping that the doctors decide to put in a G tube. That is a tube that is surgically inserted straight into her tummy with a port to the outside. She hates a tube in her nose (pretty obvious) and I think it makes all of her congestion even worse, she is starting to fit her nickname Lila bear, with all the grumbling sounds she is making these days.
We also found out that the nutritionist that we were working with grossly miscalculated what Lila should be getting with fortifying her milk. She was given way too much so she has been gaining 67 grams a day instead of the 10 she should. I am beyond mad. We won't be seeing her again.
Another odd thing. Lila only has gag reflects once and a while. She gags at tongue depressors and suction but when the ENT docs came and scoped her she hardly seemed to notice. The were touching the sides of her vocal cords and she just patiently waited till they were done. Something they have never seen before. They said that could be due to her "neurological whatever" a term I am fast coming to hate.
While she is here they tested her pituitary gland, liver, thyroid and some other things and once again all have come back normal to our delight.
4 comments:
I am sorry you have doctors coming and blaming things on her "nuerological whatever"... that must be really frustrating! I love the picture where she is sticking out her tongue at the suction! Smart girl!!! Love you guys!
Kristi, you are such an amazing woman. I am so sorry for all that you guys are going through and can not imagine doing it myself. Lila is so beautiful and sounds like she is a pretty strong little girl. Please let me know if there is anything that I can do for you. You are always in my prayers. Love you!
We had a nutritionist tell us that Eliza should eat about six cans a day. Well, we are lucky if she can tolerate 2 or 2 1/2! After trying to force food down her in the beginning and her throwing it up, I realized she was wrong too. I spoke with a nurse about it and she said it happens all the time because they calculate what a active/moving child would need, not a child with limited movement and a neurological issue. Needless to say, we haven't been back either :). I think as the mom, you find out what works for you and Lila and go off that. Lots of trial and error - at least there was for me.
Thanks for the update! I hope things are looking up today
Kris I am sorry you are apparently living at the hospital. I would love to come visit. Did you get my card in the mail? Hang in there, we love you guys!
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