Wednesday, September 15, 2010

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

6 comments:

  1. :( Thinking of you all!!! I sure hope the dialysis helps. Poor little Lolly! Please give her our love!!!

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  2. Oh Robbie. I'm so glad that they were able to give her the catheder so you don't have to watch them poke her anymore. I can't imagine what you are going through but know we are all here praying for you and your family. Everyone is really taking tabs. I've had many phone calls to read them the blog because it's private. Keep your head up and know Heavenly Father is with you at this time to keep you strong.

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  3. Every time I read your posts I think of my Natalie. She's just a few months younger than Lolly and has such similar spunk. I can't imagine what it must be like to watch her go through all this. I wish I could package some of Natalie's energy and send it to Lolly now that she needs it. Kimball must've caught one of Lolly's awake moments yesterday and he saw the similarities too. We will keep praying for all of you.

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  4. We are praying for you Lolly. If you need any help with your kids lindsay is more then willing to go over and watch them. Love you guys.

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  5. As much as you didn't want it to happen, maybe it's best in the long run and will give her little kidneys a little break and boost to get going again.
    Hope tomorrow's report shows some improvement!

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  6. Can I sit with Lolly for a bit on Sat am or pm so you can take a nap? How much longer will your Mom be around? Or, I can come get Sammi for a few hours on Sat and Sun. I really and truly expect a call. I'm a control freak too, so I know how you feel! But, it would really make me feel good if you would tell me what I could do!

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