Dialysis

I appreciate all of you checking on Lolly and waiting for updates.  I try to squeeze in a few minutes here and there to update the blog, but most of my time is spent on the phone with Ben or the nurses when I'm at the apartment, taking care of Sammi, driving between the hospital and "our" apartment, eating, talking to doctors and nurses, and caring for Lolly the few minutes she's awake each day.  Life at the hospital is a strange mix of time flying by and dragging on- simultaneously.  It's a strange feeling to be living the hospital life again. 

Lolly is doing okay today.  She's mostly taken steps backwards since we've been here; we haven't seen many improvements.  Last night, Lolly had a transfusion of red blood cells.  We were hoping it would give her a little boost to help her finally wake up today, but Ben said she was completely out of it this morning.  Before I got to the hospital (only one parent can sleep here every night, and I'm taking full advantage of Ben's presence before he leaves tomorrow) this morning, Lolly was taken down to radiology where they put a catheter/port in her juggular vein.  The port is for dialysis, but they also draw her labs out of it (no more finger pokes!!!).  Lolly had to have a blood draw every four hours at first, so she was running out of places to poke.  That is the silver lining to needing dialysis- no more finger pokes. 

Lolly was sedated for the procedure, and since she was already wasted before the medication, she is completely out of it.  Ben was a little bit concerned, so the doctor came in to check on her and said that since her kidneys aren't functioning, it will take longer for the sedation to wear off.  In the several hours since her sedation, she hasn't woken up, just yelled out a few times.  She usually has a grimace on her face (sad). 

It's weird to even write this, but Lolly started DIALYSIS today!  We always knew our children were advanced, but she's like 75 years ahead of schedule on this one!  (hospital humor...)

Honestly, I think I'm still in shock about this whole situation.  On Monday, I was a complete and utter mess (ask anyone who spoke with me that day), and I think shock is just a coping mechanism.  I have not been able to cry since we've been here (which I do not consider to be a good thing)- I'm still trying to take it all in.  I can't really let my mind think beyond the current day.  I am not good with trials of patience, and this certainly will be one.  I am somewhat of a control freak (Ben and my mom would probably say I'm a TOTAL control freak), and it's really hard for me to take help from people.  Thanks to everyone who has offered to help- I just might have to take you up on your offer at some point.

I'll try to write more later.
Love you all!
Robbie