Staying a little longer

This is my 2nd attempt to get this posted ( i had to completely re-write it)...so it will be brief this time.  I am really tired.

Sydney has not had a great day today.  She has been really tired, and not wanting to do much.  Sydney has lots of things going on:

1) Sydney is having issues with going to sleep in the hospital. It just takes forever to go to sleep and when she does, she has nightmares.  It is so sad to watch. She will wake up and reach out to touch one of us, so she knows that she is safe.

2)Sydney O2 level have been poor today.  She has needed to go back on her O2, but it really does not seem to do much to help her.

3) Sydney has been holding a lot of fluid again.  She actually pee pee'd over a liter of fluid off of her little body.

4) Another issue that might be occurring, Sydney may be "drying out" from all of the fluid leaving her body.  The team has backed off of the amount of lasix and spiralactone to see if her O2 levels will rally again.

5) Pulmonary came and assessed Sydney today. They would like to try a few things, and see if they can help Sydney's sats too  Being that Syd is now on a beta blocker, this needs to be okay'd with cardio first.  I will find out what the plan is tomorrow.

6) The mysterious rash continues.  We just cannot seem to get to the bottom of this.  It is driving me a little nuts, but the docs feel strongly, she is okay at this point.

Sydney's spirits did lift up when the Kurz girls came to visit.  Syd's face just brightened up. Boy this really made her day (mine too to see her so happy)! She just got to be a kid for a little while instead of this little patient.

Thanks as always for checking in.  This process has been so wearing, and I am feel quite run down, and sometimes, emotionally fragile.  I can be strong, but the stress builds, and gets to me, over time.  I had one of those moments today...and it took my breath away.  I think, maybe at this point, a little rest, and hopefully I will be ready to take on the next day.

I wanted to give thanks for the help so many of you have offered and given.  I know I have not been able to thank you all personally (like I would like to do), but please know how grateful and thankful I am.  God bless you all.

Love always,
Christy