In PICU

I'm here with Ellie in PICU. She has fluttered her eyes open a few times. She is very jumpy...any noise or touch she startles. I think she is thinking, "Don't touch me...ahhh...what is coming next". The doctor said it feels like you've been run over with a train.

The Dr. said that when he wraps the wires around the bones he has to twist and pull so hard that it practically lifts her off the bed. He said that her bones are really soft (which is to be expected...they are not used to sitting and standing ) so when he wrapped the wire, two of the bones (vertebrae) broke in half.

That sounds scary.

He says they will grow back.

I asked if the wires can saw through or break any additional bones (while inside of her). He said he's never heard of it.

She did not need to get anyone else's blood. She lost surprising little amount of blood. She lost 500 mL of blood (a pop-can size) and got back 250 mL of her own blood (circulated through a machine that cleans it).

I asked if since her lungs have been used to being compressed or lying a certain way (from the scoliosis) is it harder or easier or unknown to breathe. He said it might be harder at first, but once she gets used to it, it should be easier.

She has an IV in each foot and an Art line in her wrist.

She has a drain bag in the wound. They expect some blood and stuff to drain.

And she is cath'd. All of her numbers look good. Her BP was a little off when they first got her to PICU, but they gave her some fluids and she looks good now.

She also has a morphine pump. But so far she is just sleeping.

She looks a little pale. She really just looks wiped out.

I asked if the bone graft would actually strengthen the existing spine (meaning without the rods, would the bones still be weak and soft.) He said at first, but after a few years the new bone will be soft and weak like her existing spine.

Here is a pic of her. She opened her eyes when we first talked to her.

This is mainly how she looks right now...sleepy, sleepy.

I asked for the oscillating mattress (we have gotten it many times before) the wound nurse came down and said that she doesn't qualify. She got it before due to pnemonia. The wound nurse said that insurance won't pay for it if unless they have bedsores or pnemonia. They can put the pump on the existing bed...but it doesn't rotate the air through different cells like her one at home does. Until we get the one from home, we will use the pump on this regular bed. It has cells, but they only inflate based on when you move around. So I asked "So it's kind of like a water bed?" The wound nurse said "Yes that's a good analogy". I said, "Well that's not what we need".

So now I have to go the route of bringing hers from home and getting it approved by engineering. We have never actually had to do this, because when I've threatened to do it before, they have always gotten her one from here. I think this time I might actually have to follow through. Which is fine, it just means that I can't get it until tomorrow.

Isn't insurance silly? Let's not pay for a bed to prevent pnemonia and bed sores...let's only pay for a bed once they get pnemonia and bed sores. Goodness!

And actually, I bet the wound care nurse doesn't actually know. It's just they don't usually do it. It's not like she called both of my insurances and asked. I suppose I could, but it's just easier to bring her mattress topper from home.

Let me explain about this oscillating mattress that I'm talking about. It is about the thickness of an eggshell matress. It goes on top of your regular mattress. It has a small (4"X 4"X 6") pump attached with two air hoses. It has 2 sets of cells running through it. One set of cells will inflate while the other is deflated. Then they alternate. It does this all of the time it is turned on.

The wound nurse also said we could use these big foam patches on her coccyx (bum) where she had pressure sores (bed sores) before as preventative. But I told her I didn't want to trap all of those germs right by her incision. So I said let's hold off.