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)
www.mandameow.blogspot.com
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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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