Today, I put my stomach to the test and watched Carson's lumbar puncture. O.M.G.!!! Is all I have to say about that.
Carson did alright. Even though she was put out, and the area they poked was numb, she still squirmed when the poked her. It was hard to watch, but I thought if she and Riley are tough enough to go through it, I need to be tough enough to watch what's being done.
So yesterday, Riley was at 12, and they lowered her pressure to 6. This morning, Carson was at 18 and they lowered her to 8. Because she was a bit higher than what Frim told us she should be (btwn 5 - 15), we will watcher her for a few days to see how she reacts to her pressure being lowered. I will contact Frim and crew in about a week to see where we are at.
We are hoping to see some improvement in behavior and rocking.
Today, we also met Anne, our all time favorite child life specialist. She talked to us about an AWESOME new program that they have started Thursday with just a few departments at Comer - Neurosurgery being one of them.
They started a program called "Beads of courage". Here is a picture of what I am talking about.
Every child with a serious illness, who goes through hell and back, gets beads. As a chiari patient, she gets beads. Each colored bead represents a single procedure. She has 2 stars for 2 surgeries (1 surgery because of an OOPPS from the 1st one), in the bag, she got a COURAGE BEAD, the ladybug bead is very SPECIAL. I will not say what it is for, but MANY of you can guess. It's from an incident that happened during her surgery. Each time from here on out, for every poke, scan, NPO, etc.....the kids will get a bead.
I think it's a very cool idea and it shows how tough these chiari kids can be! Carson and Keegan also received a few beads as well.
Thanks ANNE, and the rest of you for getting this program started. The kids just love it.
4 comments:
Yay!!! I'm so happy to hear they both had normal pressures. Hopefully your kids are on the up and up and won't have anymore invasive procedures or surgeries in the near future. ((((HUGE HUGS))))
That Bead thing is pretty cool! Thanks for sharing. I'm very impressed with everything the Child Life Specialists do for our children.
Hey there - we are home again. Can you sneak away some night next week? Let me know!
So glad to hear the punctures worked, wow does that sound hard to watch.
The bead thing is very cool - Karly received similar beads, too, for her cancer treatment. It's pretty cool to have a visual reminder of what she went through.
Glad both kids are doing weel. keep us posted.
Little Tuesday gets beads for her cancer treatments as well. I think it's a fantastic idea, esp for the older children. (sad, though, to see just how many beads your little darling has already earned)
What a great idea (courage beads)!!
Somehow I missed Riley going down to 6. I was thinking Carson was the only one. Sorry for that. Keep us posted on how they're doing.
love ya,
Kaci
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