tips and tricks

[rainsplats]

Looking for advice/tips/tricks for making the PICU easier. Is there anything you wish you'd known sooner? Looking for hidden gems like asking for handicapped parking passes for portable oxygen.

Is there anything else you do/did that make your picu stay easier? or anything annoying that you got rid of somehow?

thanks,

:)

[Chrissie]

Well I could go on forever about the PICU stay. #1 was horrible and #2 we had it down. Things I wished I would have known..... It closes to parents at 7am and 7pm for shift change, makes for a nice break that you HAVE to take. When we were there in January for Kylie's glenn, they told us they were working on letting people sleep in the PICU (assuming it was one of the nice rooms) Beds 2,3, and 4 are horrible! The med droping machine is so noisey!! Make sure you tell the staff you want to know when or if your child is being moved. Kylie always got bumped around. I would leave to pump and come back and she would be missing. Don't let them tell you what is best. You are Mom and you know how your baby is feeling. Kylie was in so much pain after her Norwood, the nurse wouldn't listen so we had to get the doctor to help. If you don't like your nurse or have a preference let them know. We had the head nurse so mad at us before we left after her Norwood. I just saw her cringe when we came back for the Glenn. :) I found taking books and the laptop made time go by so much faster. Ask lots of questions. I was so confused about every little thing. We stayed in a RV for the 1st stay and the U hotel for the 2nd. Made things eaisier. Oh take flip flops for the PICU showers. GROSS! There is a nice shower in the Neuro unit just around the corner of the PICU. I don't know if this is much help. I am pretty sure much has changed since we were there. Make freinds. I wish I hadn't been so shy and got to know more people while we were there. We are all there because we have a sick child makes it allot eaiser if you have others to talk to. Not to make you feel negative, but we had horrible times with both PICU stays:(
Hope this helps.
Chrissie:o