Friday, October 29, 2010

Back, but Hopefully Not for Long

The nurse woke me up at 6:30 yesterday morning to tell me that Averi was coming back upstairs to the oncology floor.  I have no idea why they picked that time but I was very excited that she was done with the PICU after being there for 5 nights.  Her oxygen levels remained high through out the night and she was tolerating her continuous feeds.

I don't know if it was being sedated or just that she was sicker this time (or both) but her recovery is taking a lot longer.  While she is looking much better, she's still a little pale and doesn't want to play or do much.  All of the therapies had missed her while she was downstairs and decided that her first day back should be loaded with lots of visits.  Averi wanted nothing to do with them.

PT consisted of screaming and no cooperation.  The only benefit she got from it was when the screaming made her couch up some of the congestion in her lungs from being intubated.  When Speech showed up I told them that she wasn't getting out of bed again and they simply blew bubbles at her while she lay there not moving.

Thankfully, each day is a step in the right direction and Averi was even better today.  She actually sat up in bed, played with her toys, and smiled.

When the doctors came by to do rounds, Dr. Olshefski, her primary oncologist, announced that Averi's neutrophil counts (the white blood cells that fight bacteria and have to be up to 500 before she can go home) have finally started to come up...from 0 to 240 in the last two days!  That means that she will be able to go home soon, maybe even tomorrow.  I'm trying really hard not to get my hopes up since she just came back from the PICU yesterday, but I did take a load of stuff home tonight. :)
(Please, get me out of this prison!)
The audiologist also stopped by today to drop off the trial hearing aid.  It's super cool and Averi loves it (note the sarcasm!).  It squeals whenever something touches it so I have to take it off anytime she lies down, including diaper changes and nurse care.  When the audiologist came back this afternoon to get it I told her I had no idea if it was doing anything to help.  She said it's easier to tell a difference at home when there are more distractions and she let us keep it for a week since we might be going home soon.  In the mean time, I will try not to let Averi ruin it since it has a steep $7,000 replacement fee.
Later in the day, while I was holding Averi, I noticed that her clothes were all wet.  Upon further examination, I realized that her entire feed was running down the front of her stomach.  Apparently her G-tube site is so irritated and wet that it has stretched out and is leaking.  Surgery came to look at it and declared that no surgery was required and that it didn't seem to be hurting her.  (Wow, they are helpful!)

Brenda, the wound care specialist, came by later to look at it and decided to take the Mickey out for a little while to allow the hole to close up a little.  She taped a dressing onto Averi's stomach, around the site, and then attached a bag to it to catch any drainage.  Finally, someone is doing something!
She said we could keep the dressing on for a week, even if we weren't using the bag, because it will keep the skin dry and clean.  After letting her site rest for a while, we were able to start bolus feeds again.  This always makes me happy because I know Averi has to be hungry and they are more like really eating.

I'm hoping for a very uneventful night so that we can go home as soon as possible!


Vicki said...

Oh I'm so very very glad to hear that things are getting better. I just sobbed to Barry about the previous few days....she sure is a fighter! Our prayers are always with you. It's so cute to hear Liam include Averi in his prayers.

Shannon said...

Tiffany-I just played catch-up up on your blog and I'm so sorry to hear of everything your precious Averi and family is going through right now. You guys are in our thoughts and prayers for sure.

And what a SWEET big sister Kaili is! I read the post where she fasted for Averi and it melted my heart.

Lauren in GA said...

I cried as I read all of these posts. Averi is such a strong little lady and you are too, Tiffany.

I am glad that things are improving bit by bit. I can't imagine what you are going through.

Vanessa said...

Here's to uneventful nights! :)