Chasing our tails.

HOLY CRAP! She may be allergic to morphine. Good thing we haven't been pumping her full of that for the past two days. Oh wait. Yes we have!

Post Op.

The tumor is out! YAY!
We are in the ICU where they are keeping her comfortable with morphine. The only time she really needs it is when they come in to check her incision. It hurts obviouIsly, and she gets all worked up and it takes all the King's horses and all the King's men to get her settled town again.
Oh yeah, and they do not allow cellphones in the ICU so I will be inputting all of my messages, and when I walk down the hall to the bathroom I will hit send. So, messages from me will be spaced out a bit. Please don't panic if I do not respond right away.
Thank you to all of you who have been keeping us in your thoughts and prayers! Those positive vibes are working, keep 'em comin'.


Mere :0)
www.mandameow.com
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Here We Go

We met with the surgeon today to discuss next week's events. As is her new
custom, Amanda kissed him on the knee. Maybe this will bring us luck? At
least butter him up a bit?
We will be checking in Thursday morning (Oct. 9th), at the moment surgery is
scheduled for around noon. They will confirm this the day before. They
will cut out the tumor and remove the entire right half of her liver. We
are looking at a good 5 hours in the waiting room. I say this, it might be
less, it might be more. I will not start to tap my foot and check the clock
every two-seconds until 5 hours have come and gone and things start
stretching beyond that. (You know, or so I say now.) Manda will spend one
or two nights in the Intensive Care Unit (ICU). Once they are convinced she
is stable she will be moved to a normal room on the Oncology floor. We are
looking at around a week in the hospital provided she does not have any
complications.
They will have blood standing by in case she develops bleeding issues.
(Anyone O+? Go donate so the city supply is well stocked, would you?) She
will come out of surgery with a small drain tube to check for any bile leaks
that may happen once she resumes eating. (Fingers crossed this is not an
issue and they do not have to teach us how to empty and measure the bile
once we go home. Just, ick.)
The FABULOUS news is, her numbers from her blood work today are still quite
high and we can discontinue the Neupogen shots! No Pokes!!! Also, they do
not need to see her in the clinic next week so our next trip to the hospital
will be for the surgery itself.
I have already placed holds on a couple of audio books at the library.
Hopefully they will be in before next Thursday so I can get them loaded on
my iPod before we check in. I may work my way through the entire Harry
Potter series from start to finish! (I suppose I cannot blame Manda for
watching Elmo 1000s of times in a row when I do the same with HP, huh?)
So, I have a week to prepare and get things settled both at home and at work
for my absence.

Mere :0)

www.mandameow.blogspot.com

Up High!

To Amanda, anything that is over her head is "up high" which is always said with multiple exclamation points implied. (!!!!!) This is not that hard as she is only 33-inches tall. The Adriamycin was supposed to push her counts down to their lowest this weekend. She has been getting shots every night since we have been home to help fight that dip. Her ANC (ability to fight infection) today was over 15,800! If I didn't know better, I would say she is part super-hero!
We have instructions to cut the shots to every-other day and we will check again next Thursday.
Thursday will also be our meeting with the surgeon to discuss the tumor resection (cutting that sucker out of there). So, we will do what we can to enjoy our weekend and get as much laundry done as possible since Manda and I are still living out of the suitcase we took to the hospital last week.
Happy Birthday to Great Uncle Rick and our thoughts are with Great Uncle Bud this weekend. Much love to you both!

Mere :O)
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Out of the Mouths of Babes

"Yay home. No Pokes!"
At least for tonight.

Mere :O)
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Long Weekend!

Well, if things continue as they are now they will stop the IV drip at 5am and we could go home whenever they decide she is not having any reactions. So far, so good.
We did not have any further episodes of Manda getting sick. This did mean that we skipped her medicine all together last night and she only got half of her dose tonight. I hear about it from the nurses but they cannot tell me she is better off throwing up the meds 10-seconds after it goes down. I personally think that is worse than not getting it at all. I should point out that the medicine in question is meant to help prevent thrush (like babies get in their mouths) so skipping a few doses here and there isn't that critical. Also, she takes it at home all the time without a second thought. She actually likes to hold the oral dose syringe and push the plunger herself. So, if the hospital is a big scary environment where we skip it for a couple of days it is not the end of the world. (Do I sound defensive yet?)
I am hoping that when we get home tomorrow, being in her own bed will help her sleep. She has always been a good sleeper. However, this particular hospital stay she is fighting sleep both at night and naps in the afternoon. Ugh! She is SO tired and she is crabby and demanding and she NEEDS to sleep! Saturday night she didn't settle down to sleep until midnight! Now here we are, 23 hours later and she is wide awake and playing with her Elmo doll instead of sawing logs. I find myself napping in the afternoons when she does just so I will have the energy to stay awake as long as she does at night. This should, make that WILL change at home.
Back to "normal" tomorrow! Wish us luck.
Mere :O)
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A is for Adriamycin

We are watching Elmo...again.  That is okay, she is calm and I think getting ready to fall asleep.  Both good things.

Today was a pretty good day.  Of course, she slept through most of it.  Actually, everything was fine except that when they started the chemo this morning they shortened the tubing between the IV pole and Amanda.  We usually get her an extension because it is so hard to keep up with her and she gets wrapped up in the shorter tubing.  We inquired about possibly getting a longer tube and they couldn't do it since the IV had already started and all of the flow rates through the IV pump were based on the length of the shorter tubing.  So, we are dealing with it. It is an inconvenience but mostly for those of us running after her. 

The good news is that the group of doctors discussed Manda's case and decided that since she has never had the Adriamycin before they would start her on a three-day drip instead of the four-days.  The level of toxicity will be a bit less and they can see how she reacts to it before surgery.  If they decide to be aggressive in treatment after surgery they will try and do the longer drip.  This particular drug will help prevent the disease from reoccurring in the future.  This makes us very willing to put up with the added side effects, but there are added side effects with this one that we have not dealt with during the past two cycles of chemo.  The first thing we are looking for is sores in her mouth.  If it hurts to eat or drink she will stop doing both.  Not so good for one's health.  She might also develop fevers and tummy troubles.  The new med she is supposed to take to prevent the mouth sores has been a challenge so far.  We offered it to her tonight and she turned it down.  It got to the point where Daddy held her down while I forced it into her mouth.  She spit some out but swallowed most of it.  Then the burp came, and then out came the little bit of dinner she actually ate.  She probably would have been fine if we had just left well enough alone.  If she gets mouth sores and stops eating we will be here on IV nutrition.  If she gets sick after taking the medicine then she is still doing what my dear friend termed "negative eating".  Either way, I don't like it.  She seems to be feeling better now.  I think we just need to back off and if she says no we need to listen to her.  She also refused the chewable tab to help with the gas in her tummy.  We did NOT force that on her.  Daddy was not so happy to have to take home the stinky laundry tonight which included the clothes she was wearing when she got sick and the two pairs of shorts her diapers had leaked on today, but he will live.  Poor guy has a sensitive nose.

I THINK I got some issues straightened out with the hospital billing department.  *Fingers Crossed* as this was my third attempt to give them this same information.  Let's see if it actually makes it into their computers this time.  If not, I now have a particular person's direct line over in billing and I can call her up and press the issue farther.

I felt so badly for Amanda this morning as we were watching Elmo and they showed some kids playing outside on a playground.  She mentioned that they were outside.  I agreed that they were indeed outside.  She asked if she could go outside too.  Hmm. Well. Maybe next week?  Although, they said her immune system will continue to crash through the floor and next weekend will probably be the low point.  Nuts.  Poor kid.

I think the best part of the day was when Aunt Suz was here visiting.  We put Manda's baby doll, Meow and Elmo doll (yes, all three) in her tiny baby stroller and took them for a walk around the halls.  She saw a large group of balloons in the room of the girl next door and started exclaiming loudly, "balloons up high!"  The girl's mom poked her head out of the door.  She was admiring Amanda yesterday saying she wished her little girl was still that little.  She asked how many balloons we had in our room.  I told her none.  She said we should take a balloon for Amanda.  I told her I could never take a balloon from her daughter that way.  She told me not to be silly, that they had more than they knew what to do with.  She went in the room and asked her daughter (mid to upper elementary age) if she would be willing to give a balloon to the little girl who didn't have one. (Geez, doesn't that sound like a sob story?) The next thing I know, the mom is back in the hall handing Amanda a balloon.  Nothing could have made Manda happier at that point.  She let it go and watched it float up to the ceiling then doubled over in a the biggest belly laugh you have ever heard.  We pulled the balloon down, handed it back to her, she let it go and then laughed again.  She repeated this over and over and over laughing so hard the top of her head turned red!  Meanwhile, the family of the girl (mom, dad, two sets of grandparents and maybe some aunts and uncles) kept peaking out in the hallway to watch.  They were tickled pink she was so happy with her balloon.  They said it was too bad we didn't have a video camera since we could send it in to that TV show for funny home videos and win $10,000.  I prodded and prodded Manda to say thank you but she was so wrapped up in her laughing and balloon wrangling that she wasn't paying any attention to what I was saying.  I thanked the family and especially the daughter over and over.  They all seemed pleased as punch.

So, that was our day.  Let's see what tomorrow brings.
 

Mere :0)

 

www.mandameow.blogspot.com