Wednesday, April 6, 2011

Lizzy update 4/6/2011 - Living with Spinal Muscular Atrophy

Lizzy still can not be lower than 25%. O2 Struggles when she is off O2. DR.Schroth said a few hours ago she is not ready. She also said" we will not be out of here for at least another week". Lizzy has to be off Bipap for 4 hours to go home and well. Which "Sigh" is upsetting but I am not taking her home until she is well. So she is right. I just want to go home you know?  This strain of RSV is brutal. I slept for 5 hours off and on and I feel that was a mistake because I feel so tired today. I do better on a few hours sleep. Lizzy will NOT let me leave the room.Which is ok. She needs me right now. She is such a little fighter!! 
Lizzy had an okay night.Lower stats and higher heart rate than the yesterday afternoon but she is moving junk out of her trunk. X ray was better I guess yesterday. Her culture only had RSV which is Great no secondary infections.

She has her favorite nurse and RT. LOL Seven years old and requests people by name. Yesterday she said " Hey..... Just where is my doctor? " DR.Schroth was very busy yesterday and did not get a chance to see her. Lizzy barters with the RTS on treatments. " Just one more cough Please then my bipap!" No more suction!! I want IPV NOW!!" She makes everyone laugh and steals their hearts here.

Keep our girl still in your prayers. She is making progress but still pretty sick.

Thank you all for prayers, balloons, gifts , making us food,and just being there for us.
"We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth

2 comments:

Sky said...

I love that she is so spunky!!!! we will continue to hold her in our prayers!!!! hugs

Lucy and Ethel said...

I agree with Sky - love Lizzy's spunk!

I trust it will help get her (and the rest of you) ready to go home as soon as possible.

The prayers continue!

'Lucy'