Long Week...Not Over Yet

Amanda had her post-operative CT scan yesterday morning.  This will be our new baseline off of which we can measure future scans.  It should show nothing.  I expect it will still be a day or two (or more) before I hear the results but that is fine.  We tried to get the BAER hearing screening scheduled for the same time as the CT scan so she would only need to be sedated once. (Two birds with one stone.) However, they could not get a doctor from the sedation department, a CT room and an audiologist all lined up at the same time.  SO, she will have to go back in on Friday for the BAER.  Friday is fiscal year end at the office so I am going to sit this one out, Daddy and Grammy will both be there with her.  This caused much stress and anxiety yesterday but thankfully the dentist was able to reschedule Daddy's appointment for the second time in a week so he can be there.  Our first thought was to just have Grammy take her down, but due to the sedation, they require a parent to sign consent to treat forms.  *sigh*

We saw the eye doctor on Tuesday.  He has been watching her eyes since before she left the NICU.  He said in June that looking at her eyes you would never know she had been a preemie. (YAY!) He said this week that her eyes are very healthy and he sees no side effects from the chemo (the Vincristine can cause issues with the muscles around the eyes) and the Duane's Retraction Syndrome even looks better than it did before.  She is looking very straight (as opposed to turning her head to the side).  He said her current glasses are a bit underpowered but she can continue to wear them unless she breaks them and only then would it be worth getting new ones. (Double Yay!)  He also said she was "smart".  It is enough to melt one's heart.

One last thing, just for human interest (you know, because she isn't interesting enough already).  Amanda's favorite new "game" in the car is going under bridges.  She became fascinated by tunnels in her blossoming interest in trains and thought the bridges on the highway were tunnels.  We told her they were bridges and we go UNDER bridges as opposed to going THROUGH tunnels.  Now she watches for bridges coming up and yells "Here Comes!" and as we go under I yell, "UNDER!" and she LAUGHS and asks for "Nother one!"  For all the stress she has brought to my life, she sure does make me smile.

 

Mere :0)

 

www.mandameow.blogspot.com

Normal Saturday at Home

We bought pumpkins tonight. Manda knows what pumpkins are from her Elmo pop-up book. She picked out a small one and Daddy and I each got one. We still haven't found a costume for her but she has a Halloween shirt so we will stay in and enjoy handing out candy to everyone else. We have pictures of each of us with Amanda from last year so now we can have comparisons.
We are experimenting this week. Normally she would be getting shots this week but not this time. No Pokes! But, that means she will dip down into quarantine territory. We will check her blood work on Wednesday after her CT scan and BAER (hearing) test. We need to make sure her numbers come back enough to do the chemotherapy on the 7th. The oncologist said this dance of numbers going up and down is more art than science. (I will admit, I did not find that statement encouraging.
The funny part of the day was when we received a bill from the hospital, who is still billing our old insurance, and we didn't bat an eye. (Because we know we don't really owe it.) Yet, the price of an Elmo Live had Daddy gasping for air in the aisle at Meijer. LOL!

Mere :0)

www.mandameow.blogspot.com

Keep On Keepin On

We meet with the surgeon tomorrow for the surgical follow up. I have already spoken to our Oncologist. I know that there were some cancerous cells left behind at the edge of the resection. I know they were hopirg to find more "dead" cells than live ones in the pathology, but they found enough live ones to mention it.
So, where do we go from here? A CT Scan is being scheduled for next week and we will check back into the hospital Nov. 7 for a 4-day-long IV drip of chemo. So far, she has responded well to the chemo without suffering many side effects. This is good, since the doctor said once her AFP (the cancer marker in her blood work) returns to normal we will do 2 or 3 more rounds of chemo and then put her on "maintenance chemo". This is all a lot of work now hoping to prevent the cancer from coming back down the road. Obviously, we will do whatever we have to do to get our girl healthy and keep her that way!
We may know more tomorrow. Then again, maybe not. The good news is, the AFP went from 16,450 in September down to 883 post-surgery (normal is 8 or below). So we are still heading in the right direction, slowly but surely.

Mere :0)

www.mandameow.blogspot.com

Home!

We made it! We will spend tomorrow getting back to normal.
We came home to surprises from our amazing friends Kim and Mimi. Thank you so much for thinking of us and giving so much to make our girl smile.

Mere :0)
www.mandameow.blogspot.com
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Red Flag

Note to self (and medical community at large): Amanda is allergice to oxycodone!

 

Our girl now has a red flag on her file saying she is allergic to oxycodone.  Good to know.  So, morphine and oxycodone are out.  She is now "on" ibuprofen.  I say "on" because she has yet to take it.  She is comfortable until she has to move.  She had a dirty diaper last night and a smaller one this morning.  We can give her stool softeners at home.  The surgeon asked the nurse today why she was still here.  Um...because you all have not released her yet.  I expect they will kick us out tomorrow.  Hoping to get the drain tube out of her belly before we head home but they do still have to empty fluids out of it so not sure how that will go.  I am also not sure how she will like being strapped into a car seat.  I am guessing that will not go well as sitting upright still requires multiple pillows and great preparation.

 

Pain meds (every 6 hours) when she is willing to take them (she saw right through the chocolate milk, apple juice and multiple switching of cups) if she even suspects there are meds hidden in something she will refuse it now.  Ack! Now what do I do?

Stool softeners (twice a day) again, when she is willing to take them.

 

She will not be climbing all over the couch for a while as she can barely turn over by herself at this point but that does not warrant her staying in the hospital.  This is all speculation on my part, let's see if I am right.
 

Mere :0)

 

www.mandameow.blogspot.com

Now What?

Flaming red itchy blistery rash. Benadryl seems to have stopped the reaction but we don't know what caused it.  Medicine?  Food? We are coming to the conclusion that even though she is very easy-going she is not exactly user friendly.

Still waiting for her to eat, excrete and take meds on a reliable schedule.
 

Mere :0)

 

www.mandameow.blogspot.com

Closer to Home

We are out of ICU, and feel "at home" back on the oncology floor. We are mixing the pain meds into chocolate milk but she is actually comfortable as long as she can lay still.
We are still waiting for a dirty diaper but she is passing gas so that is a step in the right direction. She ate part of a hot dog, a few bites of banana and some watermelon at lunch so maybe those will get something moving down there.
Now we await further instructions from both the surgeons and the oncologists.
All good news so far.

Mere :0)
www.mandameow.blogspot.com
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Cooperation

We have turned off the IV pain meds! This means she needs to take the oral pain meds. She is still restricted to clear liquids. They do not want her to eat food until she has a dirty diaper. The child has not eaten since Wednesday! The pain meds act against this process too Our nurse yesterday convinced the surgical team to let her have 1/2 oz. of chocolate milk with her meds in it to ensure she would be willing to take them. Remember our issue in the past when we forced medicine on her? She throws it right back up again.
Parents, nurses and doctors working together with this particular child's tendancies in mind. I never thought I would see this kind of personalized attention and cooperation. I am glad to be proven wrong.
We might move to a normal room today. Will see how the day progresses.

Mere :0)
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Progress

She is on a stable dose of fentanyl.
The NG tube is gone and we moved the sensor that reads her pulse and oxygen saturation level from her thumb down to her toe so her hands and face are now free! She is taking a nap now, getting the first real sleep in days.
YAY!
Mere :0)
www.mandameow.blogspot.com
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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)
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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